I’m not really a b*tch, I just play one in your life.

I have a BIG apology to make. The Southwest Airlines counter at Denver International Airport got a giant taste of crazy on Sunday thanks to my multi-car emotional pile-up. Thankfully, there weren’t any casualties, but my insurance rates are definitely going to go up.

Here’s what went down: As many of you know, I’m upset with Memorial Sloan Kettering Hospital. They have been poor at communicating with us about treatment plans and what’s next for Ben. Whenever we’ve seen his doctor, he sticks his head in and says something like “I know we need to chat…” and then we don’t see him for the remainder of the visit. This was to be Ben’s fourth cycle of Hu3F8 with no end in sight and I’ve been anxiously awaiting answers. We were supposed to come to NYC for Ben’s fourth round two weeks ago, but, thanks to the vacation plans of our social worker, it didn’t happen.

I filed that frustration away until a coordinator called to ask us if we’d consider pushing Ben’s therapy out until August because they were overbooked with kids. First of all, that’s very sad to hear that there’s such an influx of neuroblastoma kiddos. It makes me sick. But secondly, they’d already pushed us out because of the scheduling snafu from the week prior, AND, pushing Ben out one more week would be in violation of the study agreement (needs to have these therapies within eight weeks of each other) so I raised a ruckus. I was told that they could “skirt around” that violation if we would consent to moving and I said no. Well, I said some other things, too, but the message I was trying to get across was no. Matt reminded me to “not shoot the messenger,” but since the people in charge weren’t communicating with us, what option did I have? I didn’t shoot her, but I did stomp on her foot a little. Actually, it was more like a forceful tap.

So, we moved forward with making plans to leave last Sunday. Sloan Kettering forwarded information on how to get a free round-trip voucher on Southwest. Hooray! This was awesome news to me. I called the number they gave me to set up use of the one-time-only “green pass.” The person assisting me was amazingly kind and booked us non-stop from Denver to LaGuardia. He told me to pick up the voucher at the front desk when we checked in. Easy Peasy!

I didn’t pack until the night before our trip. This is my usual program, mostly because I despise doing laundry and I’m a hideous procrastinator. Regardless, it helps me focus on packing instead of brooding about treatment. Matt and Madeline dropped us off at the airport Sunday morning and we went inside to check in and get our vouchers.

Ben was already tired (and, I’m sure, anxious about a week of therapy.) But I was in a pretty good mood. The line was atrocious to check in, so I pointed Ben in the direction of some chairs. A nice Southwest agent overheard me talking to Ben and directed me to the front of the massive line. Awesome! Everything was going wonderfully. I was called forward by my “new friend” Sherrin, and said, “we’re here to pick up our green pass for travel.” And she said, “you’re supposed to get those from the hospital.” And I said, “but I live in Denver and the hospital is in New York and all they sent me was this email.” I showed it to her. She wasn’t impressed. She said she couldn’t help me and my entire body tensed as the crazy started to flow. I said, “but your reservations agent told me I’d pick them up here at the counter!” And she said, “Well, I wasn’t on the phone and I can’t be held accountable for what he told you.” The words shot out of my mouth like machine gun ammo, fast and loud. “You. Need. To. Find. Someone. To. Help. Me. NOW!” She gave me “the look” that every customer service agent dealing with someone they’re annoyed with has down pat, which promptly sent me over the edge. Then came the tears. And the story. With hyperventilation. “mysonhasbeenbattlingcancerfor11yearsandwehavetotraveltogethistherapy!” Her face softened a bit and she retreated to get a manager. He was mean, though, and kept shouting at me to show him the email I received. By that time I was in hysterics. One of the other agents was crying, too. She came over to hold my hand, which made her an instant ally. So, I asked her if she could get this guy to stop being a dick to me. Yes, I said those words. And he threw my phone on the counter and said “I don’t have to help you at all.” Then they all went into a secret room in the back for about 20 minutes, the long line of people undoubtedly cursing me under their breath.

Of course, this is a Sunday, and nobody was at the hospital who could help us. I called Matt. Mostly just to vent, because, in all honestly, what could he do? I checked on Ben, who was melting down, too. That made me feel like total crap. He came over and hugged me. I told him that everything would be okay and that we would get it figured out. We just had to go with the flow. Then he said: “I don’t understand why that hospital doesn’t care about me.” He’s never around when we’re on the phone with them so he doesn’t know all the behind the scenes stuff. Yes, he knows when plans change and why they change, but if he feels like they’re not treating him properly, then there’s a huge problem.

Sherrin came out of the back and the manager dude left without giving me a kiss – or throat punch – goodbye. She said “we’ll get you on this flight but you MUST get that voucher from the hospital.” I leapt over the baggage scale and hugged her with all my might. She said “I lost my son in a car accident a few years ago. I saw the terror in your eyes of not being able to get your son what he needs.” I softly repeated how sorry I was as she held me tight. We’re all fighting some sort of battle, my friends. We need to be gentle with one another.

Then a wonderful man with a wheelchair swooped Ben up and whisked us past the horrendous line at security. The drug dog sniffed me briefly but didn’t make a fuss… all I had was oxycodone and a variety of anti-anxiety meds, which, despite being prescribed to Ben, I did think about snagging one or two for myself.

And since then, we’ve had a challenge each day. Small by comparison, but challenges nonetheless. I got the precious vouchers from someone other than our social worker. She blamed someone else for the snafu, who blamed Matt for not letting them know when we were traveling, who called bullsh*t on the whole thing, because they KNEW when we’d be traveling. I think they’re servicing too many children because the ball is getting dropped. A LOT.

So, let’s preserve my mental health by finding a cure for Neuroblastoma sometime soon. Because it is all about me.

And my sincerest, deepest apologies to Southwest Airlines for being a crazy b*tch.

 

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4 Comments

  1. Oh wow! Glad ya stayed calm enough to get it across to them jerks. Hehe…..Way to be scary momma. Hugs for all.

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  2. Sorry you had to go through all that. Hope things are a little easier now. Lots of love, hugs and kisses to all of you.

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  3. I’m so sorry everything has to be such a struggle like your not struggling enough and poor Ben has to witness this first hand. Big corporations seem to not have a human heart attached to them and they can be so callous in their apeal to be “corporate right”! Thank god and that is the only person who intervened in that room to get those people to open their eyes and get you and your precious cargo on your way to NYC!! I pray for you often and would give anything to just give you a hug!! God bless you Sarah!!

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