#4 The Happiest Place on Earth, Until It Isn’t

I wrote and wrote for about 2 weeks straight, enough that I had generated at least 12 blog posts before creating this website, with the intent of posting things over time. But this blog about our spring break trip to Disney, was not written with all the others, I am writing it today. I completely skipped over sharing our time there, and that’s probably because it was HARD.

2 days after my first meeting with Oncologist #1, we made it to Disney World and got our RV situated at Fort Wilderness. My phone had been ringing off the hook since that appt. I was getting calls from nutrition services, physical therapy, infusion scheduling, genetic testing, social services and on and on. I had to make my own phone calls to schedule a stat dentist appt for dental clearance, acquire chemo meds from a specialty pharmacy through the mail and sort through insurance hang ups. I got a call from the office of Oncologist #1 saying that my insurance would only cover my chemo if it was being administered at a hospital as an in-patient procedure. Since I wasn’t being admitted, they sent me a quote for what I would owe for my first chemo treatment. It was $80,000, but they were kind enough (insert sarcasm) to give me a $20,000 discount, bringing what I owed to $60,000. This didn’t make any sense to me and after several phone calls, I was able to get all the medical codes being submitted to insurance for my treatment. There were 26 codes in total. I called my insurance company and gave them all 26 codes…turns out ALL were covered except for one which was a $100 consultation fee. Of course this was great news, but I was frustrated at how much time I was spending doing someone else’s job, time I was supposed to be spending relaxing with my family at Fort Wilderness. I had a similar experience with acquiring one of my oral chemo medications that cost almost $14,000 for 14 pills, I was given a discount, so I owed $6000. At this point I just paid it because I needed the medication quickly. “I’ll just figure it out later”.…. Dealing with the office of Oncologist #1 was definitely starting to weigh on me.

I spent about 4 hrs on the phone every morning, and then in the afternoons we swam at the pool, sat in the hot tub, saw the Hoop-Dee-Doo Revue, drove around in the golf cart and did the daily craft activity offered at the Fort.

We had reservations to go horse back riding on the paths around the Fort, but this was an activity that I could no longer participate in, so Dave took the kids while I called my insurance company (again) and spoke with a Cancer Center in Tampa to try and get an appointment with a myelmoa specialist…fun times.

We only went to a Disney park one night, and that was for the after hours event being held at Magic Kingdom from 7p until 1a. Per doctor’s orders, I rented an electric scooter and made the kids jealous as I zoomed around them and cleared my own path through the crowd of people.

Every once in awhile, one of them would sit on the floor of the scooter to hitch a ride and rest their legs. They also enjoyed being able to leave their turkey legs, ice cream treats, souvenirs and waters with me while I sat outside the exit of each ride to wait for them to be done. Maggie was even so kind as to snap a picture of me holding their turkey legs as they entered The Haunted Mansion.

Dave and I were able to enjoy the fireworks by ourselves while the kids rode Space Mountain a few times in a row. I’m not going to lie, when the kids weren’t around, I found myself wondering if this would be the last time I’d ever get to Magic Kingdom. It’s a place I’ve visited almost every year for the last 40 years and having so many memories of time spent there with my parents, grandparents, Dave, and countless friends from elementary school, high school, college, even friends from adulthood, and now my own children, I hold it near and dear to my heart. As the evening progressed and the lines dwindled, we had time for one last ride, and it was Peter Pan’s Flight. Don’t tell Oncologist #1, but I did some investigating with the Cast Workers and found out that I could have the conveyor belt walkway stopped since I was having mobility issues. They did just that for me which allowed me to limp my way over to the Flying Galleon, slowly take my seat and then be safely carried away. We soared over the miniature model of London and watched Captain Hook stand precariously on the open jaws of his Crocodile nemesis...Tick-Tock. Actually it’s kind of fascinating, I had to look up if it was a crocodile or alligator in Peter Pan and AI told me the following. “The crocodile represents time and the inevitability of death. The ticking sound of the clock in the crocodile's belly amplifies this symbolism, suggesting that Hook cannot escape the passage of time.” Wow, if that’s not eye opening. None of us can escape the passage of time, mortality can either be viewed as a constant threat, or a reminder to live every day like it’s your last. This is the only ride I did on this trip, how bizarre/fitting/ironic…I’m not even sure the right word to use, but I am finding myself sitting here shaking my head in disbelief at what Tick-Tock really represents.

Between the phone calls and other daily activities at The Fort, I found myself occupied during daylight hours and I was mostly able to appreciate being at The Happiest Place on Earth. But nighttime proved to be the exact opposite and I was finding myself in The Darkest Place I have ever been in my life. I was struggling mentally. I cried…and cried….and cried some more. So many questions persisted in my mind and I spent my nights consumed by fear, pity, sadness, and grief. Soul-crushing grief.  As my thoughts perpetually kept coming back to my kids and their future lives without me, the pain of my sorrow can only be equated to feeling like I had tragically lost all three of them at the same time in a horrific car accident. One night was so bad, I spent a very long time sobbing uncontrollably to the point of coughing, hyper-ventilating, panicking, but I couldn’t stop. I would look at Dave in fear and just sob over and over, “I can’t stop, I can’t stop!” I could tell he was getting super worried so he took the risk of getting Genevieve, Maggie and Robbie and bringing them into my room to hug me. I think they were scared at first, but it worked. As they all three buried their heads into my neck and chest, my breathing regulated, my pain subsided and as I looked at each of them I realized I hadn’t lost all three of them suddenly in a car accident. They are still here, and so am I. There are countless parents who have had to suffer through the pain of burying a child and would probably do anything to have one more hug or run their hands through their child’s hair just one more time. I am blessed, I still have time with them. Do I know how much? No. But every day that I am still here for hugs or back rubs is a day to be thankful for.

Robbie, having never seen what a person looks like after a really hard cry, innocently asked, “Mama, why are your eyes so puffy?” He grabbed my phone and snapped a picture to make sure I could see the same thing he was seeing, and probably to check if I was as worried as him about how I looked.

I forgot this picture existed until last week, and it’s ultimately what prompted me to write this blog post. To show I’m human, and the early weeks of my cancer diagnosis were hard and peppered with irrational thoughts, consumed by overwhelming fear and unpredictable bipolar behaviors. But over the last few months, I’ve been working hard to overcome these feelings and can say I really am so much better mentally right now. I am also neither ashamed of this challenging time, nor afraid to share it with you. I’m grateful for those dark days, because it helped me find a path to walk full of determination, faith, hope and an unwillingness to accept anything short of miraculous. This wasn’t my last trip to Disney. Just wait and see.