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.

 

Through my daughter’s eyes

Starting with a wee rant: I’m super size mad with Ben’s hospital in NYC. They are really messing with my quest for inner peace. I know I have control over my own emotions, but they keep throwing crow bars at my happiness and I’m getting tired of dodging them. Grrrrr.

So, here’s the rundown: Ben was due to start his next round of antibody therapy July 13th. With Madeline on summer break I thought it would be nice to take her along with us, and to add to the fun, I scheduled a last minute, pre-NYC mini-vaca to the Great State of Ohio to visit family and friends. I only booked the tickets to Ohio because we were waiting on the approval from our social worker in NYC to travel on from Columbus to NYC for therapy. It’s a pain in the butt, but there’s a reason why. See, there’s a whole legion of people who have abused the system over the years, folks using the Ronald McDonald House and travel privileges for their own vacation time instead of care for their sick child, so every tiny detail has to go through our social worker and she’s in charge of approving when we travel. Once we got the lab results that Ben was medically cleared for another round, our social worker needed to let the Ronald and a charity we work with to get flights know that we were cleared to come. However, she went on vacation without completing the task. It’s no secret that my patience with this NYC facility is near the “hot liquid magma shooting out of my head” level, so we told them to reschedule Ben for the end of July instead. More Grrrr, but at least we have some extra time to get a solid travel plan in place.

Anyway, while we were in Ohio, I celebrated my 47th birthday. I’ve never really stressed out about numbers before – each birthday is undoubtedly a gift – but 47 struck me with a feeling of “Holy crap, I’m on the downward slide to 50.” And, for whatever reason, I’ve decided that by the age of 50, people should really have their sh*t together. Here I am, a well-educated, yet unemployed individual who has no security for her future. No retirement plan. No investments. No savings. No adult stuff. If I were to die, my children would inherit nothing.

I’m 47 and I’m worth nothing. Honestly, I tried to set myself up for a much better life through getting a solid education, but even if I could hold a “real job” with the rigors of a sporadic schedule hanging over my head, I wouldn’t want to. Because despite the lack of money, my life is very rich.

I know my primary job is to care for Ben throughout his medical journey. And I know I kick ass at that. My dad honored me with the ultimate compliment recently. He said that he believes Ben has done so well for so long because of my love and support over the past 11 years. I’ve been steadfast in letting Ben know that I’m with him, no matter what. And, I’ll be honest, there have been times that I didn’t want to. I was scared. I was exhausted. But I knew that Ben was more scared and more exhausted, and my job as his mother was to give him every single bit of me. I’m pretty confident that I did just that.

Now, with Madeline, it hasn’t been as consistent. I’ve missed first days of school and parties and field days and performances. She’s had to rely on the kindness of others to help her when Ben has to travel. I feel like I’ve let her down time and again throughout her 11 years on this planet. So, when she gave me my birthday present – a jar she decorated and filled with 10 slips of paper listing things she loves about me – well, I felt the Universe give me a giant hug, letting me know that we’re all on the right track. Here’s what she had to say:

*You are such an amazing, strong person. *I love to snuggle with you. *I don’t think you know how funny you are. *You always know what to do in sad situations. *You’re very unique, and I love it. *I think you’re a great caretaker. *You always know what to say. *I love to hear about your future books. *I am so proud to call you my mom. *Just, thank you for being you.

Of course, as I’m reading each validation, the tears fell. They cleansed my weary soul of all the nonsense I think I’ve been doing wrong. My inner voice is dumb. It’s busy telling me all the times that I’ve failed. I think I’m going to listen to Madeline’s voice for a while. Because, in her eyes, I’m giving her what she needs.

And that’s priceless.

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