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I have breast cancer and am a snappy dancer

Tuesday, September 13, 2011

9/11 10th Anniversary Speech

My name is Dina Mountcastle. 10 years ago today, my life, my perspective, changed forever. I was 32 years old, living the single life in New York City, and running late to work, as usual. I had originally moved to NY in 99 as an aspiring stage actress, but soon realized I wasn’t willing to live off Ramen noodles and sacrifice daily comforts for my art – so I decided to focus on my day job and start to make a career out of it. I was fortunate enough to land a job working for a small insurance brokerage firm in the financial district, just a couple blocks from the World Trade Center. Riding the subway to work that morning was no different than any other morning. My commute consisted of 2 trains, and I usually emerged out onto Fulton street facing the North tower, then headed east to my office building. As we exited the train, we started heading up the steps towards the street. A normal morning commute consisted of lots of people, but moving in sync, rarely congested. But this morning, suddenly, everyone on the stairs stopped. Our routine was interrupted, and our heads which all habitually faced down, slowly turned up to the ground above – to see what the hold up was all about. I was probably a bit irritated to be honest, I was late for work anyway.

Everything moved in slow motion from this point – people began moving slowly out of the train station up onto the street. I remember I was emerging out onto the street and a woman on my train was next to me – we both crept out onto the street and looked up to see this incredible fire, billowing out of the middle of the building. We all were transfixed on this fire, and also, trying to stay under the coverage of the building, as things seemed to be falling from the sky. This woman and I, still standing next to each other suddenly grabbed hands as we looked up at the building – not really believing what we were seeing. People. People hanging out of the burning building, waving white cloths of some sort – people – falling – people - jumping. I squeezed this strangers hand, gave her a look as if to say “what is happening?’ and then let go and started moving towards my building. I never saw her again.

I only got about 30 feet when suddenly I heard this loud explosion sound, the ground shook and people I happened to be around there on the street corner all collectively let out a scream as we all lost our footing a bit. Only later did I find out this was the 2nd plane hitting the other tower. Grabbing a metal trash can to help me back up, looking to the sky for a plane dropping bombs, I ran as fast as I could the remaining distance to my building. Once in my office, we received sporadic information about what was happening. Sporadic internet, sporadic cell service. I remember just wanting to call my mom. Miraculously my first call to her went through where I told her to turn on her tv – and let her know that I was ok so far. We knew finally they were planes that had hit the buildings, not bombings. My coworker and I stood out in front of our building, watching the burning towers. I remember asking him, ‘how are they going to put out those fires? It’s too high up’ and ‘who hates us this much?’ Never in a million years did we ever think the towers would come down. Never. I stood there praying for my friend who had just started a job in the towers – trying to count the stories to see if I could get some sort of handle on where she was. I called her and called her, but no answer. Unfortunately, that is many people’s story. My boss at that time advised me to go and get back on the train and go home – the train I take home was directly across from the South tower. I grabbed my purse, but something inside me told me to stay. Something told me not to go back outside. I put my purse down, and waited. About 15 minutes later the building shook so hard we actually saw the aftershock ripple through the windows of our office - everyone, about 7 of us, fell to the floor. The sky had gone completely black, we thought a bomb had gone off either inside our building or in a building next to us. I panicked - and grabbed my things again and went to the stairwell of my building - as I opened the door, smoke billowed out onto our floor and I saw that there were people already in the stairwell - firefighters and building management people forced us back up onto our floors - they were all saturated in this white powder - coughing and some throwing up. The smell was something I can still smell to this day if I think about it hard enough. It’s not a smell I can even describe. We locked ourselves into our office at that point, as other people in our building were really panicking at this point, and we wanted to just seclude ourselves and try to stay as calm as possible. It was then when we returned to our office that we learned the towers had collapsed. I don’t remember if it was by a phone call, or an internet feed - I just remember us looking at each other, saying ‘gone? The towers are gone? “ Debris had blocked the entrance to our building so we waited and listened to the sporadic news - not really knowing what to do next. After what seemed like forever, we were given the go ahead to leave from our building maintenance crew. We decided to leave as a group – so my boss found some t-shirts, there in the office, ripped them up, rinsed them in water and we all covered our faces and started to head out. It was difficult to breathe and walking out onto the street was surreal. It was white – all covered in this grey white dust – and quiet. All I could hear were the faint sounds of what sounded like car alarms in the distance. I remember someone approaching me with a cup of water – but no one spoke. I can honestly say, I have never felt more small and insignificant than I did in these moments. Everyone had their faces covered, and our eyes were burning from the debris dust in the air. You couldn't see 1 foot in front of you. We all simply stayed close to one another and headed uptown towards the garage where my bosses car was parked. We passed by the hospital that was downtown, and I saw medical personnel sort of lined up, waiting to help all the injured – but there weren’t any. They were all just standing there. Once we got to the vehicle, it was clear things weren’t moving very fast. We weren’t getting very far, and we knew from the information on the radio, once we got to a bridge we were only allowed to go over once, we couldn’t come back into the city. I was the only Queens girl, there were 2 Jersey people in my car, so I hopped out, said I’d walk the rest of the way. This was around 14th street I think? I started making my way uptown. I remember walking, and seeing people crying, and handing out food, clothing, shoes, water, anything. It was like we all knew each other – we all had this strong sense of familiarity with one another. When I finally arrived at my train station at 59th street, I took a chance that maybe, just maybe the trains were running again and I could get back to my apartment. I didn’t know how to get over the bridge by foot, but I had made it this far, if I had to, I was sure I’d figure it out. There was no one around – no one. I made my way down the stairs, and as I approached the platform, my train miraculously, pulled up, and the door opened. It felt like a dream – I looked around, stepped onto the train and sat down. The train went under the river then popped up above ground in Queens. Once we passed Queensborough Plaza, the conductor stopped the train on it’s tracks as it made the turn into Queens, and you could see directly downtown, the smoke still billowing. He said over the loud speaker, ‘they’re gone – the towers are really gone’. And I just cried.

All I knew once I got home, is that I wanted to go right back again. All I could think about was getting back down there to help. I’ll be honest with you, other people didn’t cross my mind that much before this – I was what we call in our house a sort of ‘me monster’ if you will. What surfaced for me that day was this incredible sense to help, it was all consuming. Volunteer spots were hard to come by, but I was able to land a 1-4am shift for a couple nights at a food tent, feeding the rescue personnel who were down there searching for survivors, trying desperately to find people. One of the strongest memories I have is all the people posting pictures of their lost loved ones – pleading for help in finding them. Pleading with tears in their eyes and fear in their hearts. We all thought that there would be people rescued. But nothing.

I used to think I had to relive 9/11 every year – to make sure I didn’t forget it – I would make myself relive the day I experienced over and over – determined not to forget. I felt guilty for surviving. Why NOT me? Why all these others? It wasn’t until I spoke with my pastor last year that I realized, all this made me feel was horrifically sad. A heart wrenching sadness that is hard to describe in words. I had to search my heart hard to figure out what this day was going to be for me to reflect upon, what I was going to tell my children. Today is a day I honor all those who lost their lives in this senseless act of hate. First responders, normal people, going to work, earning a living, just like us. Just normal people. These’s people’s lives meant something, individually and collectively, and it is my duty to remember them, pay tribute to them, to honor them. They - are who ‘we will never forget.’ I heard recently on television as they interviewed the brother of someone who died that day say “heroes never die of old age, they die being heroes”. I never thought of it that way, how very true this is.

What I choose to relive now is the humanity I witnessed. I witnessed first hand the act of humanity come out of an act of terrorism. What better revenge for such hatred, then the compassion shown to one another in NY, and as an entire country, that day. Instead of going back to the terror of that day, I try to go back to the humanity. The faces of the people on the streets as I walked those 40 or so blocks – handing out water, shoes, food, towels, clothing, anything. And not asking for a thing in exchange. People of all colors, races, backgrounds, suddenly united on one front. That’s what I try to hold onto, that’s what I want to teach my children. I lift up the hearts today of those changed by this. And I thank the Lord above everyday, for my life that I’ve been so graciously given. What a precious gift sweet Jesus. Thank you and God Bless.

My Water bowl Runneth Over.....

Wow - has it really been a month? Crazy. I can't believe how full my plate has been as of late. I try to be very intentional to NOT bitch about it - because it being full is a blessing all in itself, but still.

As I type here I have my Madeline next to me in my bed, she has been running a high temp this evening. PJ is sleeping in her little twin bed with Ginger. Madeline turned 6 on Sept first, and yesterday she lost one of her front teeth. I can't believe how much older she looks with that gap in her smile. So frickin cool. She and I have been hanging out in 'mom and dads bed' most of the evening, something she loves that she gets to do when she is sick, and she was resting her head on my shoulder as I watched Martina McBride's new single 'I'm Gonna Love You Through It' - which, by the way, is AMAZING!! Anyhow, we were watching it together, and I was crying a bit through it, and Madeline lifted her head up from my shoulder, looked at me, then asked if I was ok. I said that this song just made me cry, she rubbed my back with her hand, gave me a kiss on the cheek, then returned to resting her head on my shoulder. Wow. So grown up. Who is comforting who here, eh? My angel continues to comfort me - she is such an old soul.

So, this month has brought upon its set of challenges for me - and some amazing lessons as well. I'll start with a message received at church that has had a significant impact on me. The director of contemporary music gave the sermon last Sunday, and his message was super significant to me. He was talking about how the manner in which he was relayed the information when he was diagnosed with diabetes as a child effected him. Because it was presented to him in such a dramatic way, he realized he had carried this feeling with him throughout his entire life. Then, he realized that this way of thinking was nowhere in line with what God says about him, biblically. I have to say, when I heard this, it was like a light went off. I so often have thoughts that I am constantly fighting - thoughts like: you can't do that you're sick, you can't have that you're sick, you probably won't live that long cuz you're sick - that kind of crap. I never really felt like I had the weapons to fight against these thoughts - and this gave them to me. God doesn't feel that way at all - and if my line of thinking doesn't line up with God's way of thinking, then I really need to banish it from my thoughts - period. How frickin freeing is that! Pretty amazing, I've put this into practice and it is working really well. What a blessing, thank you Jake.

PJ and I have been feeling the financial pinch of our growing family. Adding another adult, mind you a special needs adult to our family has made a difference in not only our family dynamic, but our budget as well. And when it rains in pours, we realize this as our APS bill gets increased, we need new tires on the van, the brakes go on the van and our air conditioner is starting to go on the house. Just figures, doesn't it? So, there's that added stress I'm trying NOT to feel as stress cuz that's not good for my health. How frickin frustrating is it to know 'Dina - don't stress here cuz stress can cause your cancer to grow' - it's like trying to tell yourself you don't like chocolate when there's a huge piece of cake sitting right in front of you.. Life is stressful, I just gotta continue to challenge myself to move through the stress differently. Arg.

So get this additional nugget of stress that I'm trying to convince myself is not stressful. I am on disability - and - unbeknownst to me - once you have been on diability for a period of time, you automatically get enrolled in Medicare. Didn't know this. I figured since I was paying my health insurance through Aetna, that whether or not I qualified for Medicare, I was paying my individual coverage premium cuz that is the coverage that I wanted. Aetna I guess caught wind that I qualified for Medicare, and decided they no longer were going to be primary - they moved themselves to the 2nd position - supplemental coverage to Medicare. Problem? Yes - Cancer Treatment Centers of America doesn't take Medicare. I contact them and they ask me how we are going to go about 'transferring me out' of their facility. Excuse me???? I called Aetna and spoke with the ever flowing knowedge of a customer service rep who told me whether I declide Medicare or not, that doesn't matter - the fact that I qualify for it is all they need to move into second position. I remind them that I've been paying them first position premium for years and that this hardly makes sense. So then I'm put on hold, then they return to tell me that I can appeal this decision, plead my case and then they will decide if they will move back into 1st position or not. Now, luckily CTCA is being patient w/ me right now - but here's the kicker - I have to officially disenroll from Medicare, then show proof of this to Aetna, with a letter pleading my case as to why I want the coverage to stay intact that I've been paying for all along - and then wait for their decision. If they say no, then I have NO primary coverage at all - how is this even fair? Since when can I not chose to continue to pay for the coverage I've had all along? I am a pretty bright person when it comes to this stuff, and I know how to push - I just wish I knew which direction I was supposed to be pushing in - this medicare world is foreign to me. As if having frickin cancer wasn't stressful enough - this is just incredible to have to try to deal with. I'm trying so hard to just stay calm, to stay calm and listen and be guided through this process.

I've spoken before in my blog about my time living in NYC - and I think I've also mentioned on occasion the fact that I am currently registered in the World Trade Center Health registry so they can keep track of my health. We may never know if my cancer was caused by what I breathed daily down there for weeks on end, but they are keeping track nonetheless. I never really thought of me being there in the financial district on 9/11 was that big of a deal. I mean, 9/11 was a huge deal, but the fact that I was there just kind of became part of me. Something very, very personal - such a personal experience, but I think staying in NYC for 6 years after, the fact that I was THERE wasn't really a huge deal, I worked with lots of people who were there. What I'm getting at I guess here, is now that I'm in AZ, the fact that I was there on 9/11 is kind of a big deal to people who live here. PJ and I had called to inquire about a benenfit dinner going on last month to raise money for the memoriam in NY and in my discussion with one of the organizers, it came up that I was there. Long story short, they asked me if I would speak about my experience that day at the dinner, then at the ceremony on the Courthouse Square on the 10th anniversary. Wow. I did this, and I have to say it was probably one of the most difficult things I've ever had to do - ever. Anyone who knows me knows that I am not afraid to speak in front of a crowd, but this was different. This was my own, private, terrifying, horrific experience - and I shared it in front of a lot of people - something I had never done before. Looking back I think maybe I spoke about that day, in detail, to maybe 2-3 people. Family. That was it. In any case, it was something I felt deep in my heart that I was supposed to do. Why? Not sure - just know it was something that was presented in front of me, and that I needed to agree to it and do it. And I did. I've posted my speech separately for any who care to read it.

Other than all this - I've been feeling pretty good. Tired. But good. I seem to be handling the 3 pills a day fine. I think I'm a bit paranoid about it to be honest - I need to chill out about it. I am just so tired lately - that's about it. I don't know what God has in store for me here with all of this going on. This insurance thing scares the crap out of me. To think I possibly can't go get treatment where I want to receive it just really scares me. I just pray that I am able to rise above the bullshit and hear Him guide me. That's the key - to be able to recognize our humanness and connect spiritually - and be led spiritually. Hard to hear sometimes - gotta pry the mufflers off. Oy.

That reminds me of a section of a Psalm I just read - that sounded like the same kind of plea I'm making here - Psalm 119:5 - "Oh, that my actions would consistenly reflect your decrees!' - I love that is starts with 'OH' - cuz that's exactly how I feel lately, like I'm crying out to hear Him, frustated with my humanness.

Off I go to takes Mads temp. *yawn* I bet all 42 year old moms of 6 and 3 year olds are tired - not just cancer making me tired, it's mommyhood - plus cancer drugs. ;-)

God Bless -