So here I sit, the night before my quadrasphere, and I just read my last post - and I have to say that yes, it hadn't sunk in quite yet when I wrote that. I am however, encouraged by my spontaneous, almost instant faith. It's when our human minds begin to wander that we tend to get anxious, depressed, fearful. Our hearts, or at least mine, knows instantly the direction I need to go. Our minds, another story. In any case, the last week or so has been difficult. It's almost like I regressed back to the dark place I was when I was first diagnosed. And I know my mind wanders, dramatically wanders. I remember the days of me being single in NYC and thinking I would take off a day or so to just sleep in, relax, just be lazy. Well, that was always a horrible idea for me. I would get extremely depressed if I just stayed in all day and did nothing. Like my mind would just create all these dramatic scenarios and I'd get all depressed for no reason. I realized I am the kind of person who needs to be out, productive, keeping my mind active and alert. So I know that it is not a 'cancer' thing, it's a 'Dina' thing. Whew.
I found myself wondering if I could have faith, yet be logical at the same time. Faith vs logic. Are they opposites or do they compliment one another? I don't think I've really made a decision on this yet, I go back and forth. I even posed this to my pastor, whom I went and visited with last week in an effort to thwart this mind trap I had found myself in. You know you've reached a certain plateau when the pastor stumbles over his words. Not because of anything I said, but I got the feeling my situation overwhelmed him. That point in a conversation where you just want to look at the person and go, ya know what, nevermind. It's ok - we don't need to talk about this, I can see this makes you uncomfortable. Ironic, eh? It was a fine meeting, I'm not complaining, it just gets frustrating to look to people for some sort of, I don't know, not answers, but comfort I guess? and just get the horrible feeling of just feeling bad because you kinda just ruined their day. I hate that feeling of making someone feel uncomfortable. It makes me want to just hug them and tell them everything is going to be ok. Isn't that funny.
So I think I'm going to need to write Oprah or Ellen, my state representative, the President - I don't know. I appealed the decision made by Aetna to move from #1 coverage position to #2 - I disenrolled in Medicare, received proof of that, showed it to Aetna and advised them in a brilliantly written letter which I will post here that I have been paying for my insurance since 2008 and I want it to stay that way, but alas, they have denied my appeal. I will appeal their denial, but my thoughts on doing that are a long shot. I know this. But effectively I don't have any primary insurance coverage at the end of this month. They said whether I take medicare or don't take medicare, the mere fact that I qualify for it gives them position to reduce my coverage. How the hell is that fair? So I am FORCED to take a government program I don't want, that I don't pay for? I am scared to death - that I will be forced to leave CTCA because remember, they don't accept Medicare - and I know in my heart of hearts, this facility, CTCA, can save my life. I'm paying for coverage they accept, but not able to use it because the insurance company I have been paying and continue to pay premiums to are now forcing me to take a government program. I don't know if I need to start raising money to pay for my CTCA treatment, or if I need to start raising money for an attorney to help me fight this bullshit - I have no idea. Funny that I'm supposed to be focused on fighting this disease and minimize stress - what a crock. Now I'm fighting insurance companies while I'm trying to get better. Needless to say I am praying and praying and praying on this. I can't even begin to imagine what tomorrow's procedure will cost.
So my nurse called me today and gave me the rundown of what to expect tomorrow. Nothing to eat after 8am. My procedure is at 2pm and I'll get to revisit all those precious pre-meds I had when I was having chemo because the beads are chemotherapy. So I'll get the steroid, the benadryl, the anti-nausea - those gems. I'm awake through it but get some fun drugs to not care that I'm awake. Lasts about an hour and a half, then I'm admitted to my room where I need to lay flat on my back for 2 hours. I remember that from last time. Drove me NUTSO. I'll be sure to ask for some happy pills so I can sleep through that part.
I've got my kids covered, but will miss them terribly. I know it's just a night, but I am used to being pinned in my own bed sandwiched by my girls, all arms and elbows all over me. The best way to wake up. I"m supposed to also do a breast cancer walk on Sat - but will speak w/ the doc about that. I know that I need to scale back. The amount of things on my calendar is a bit overwhelming. Back when I was doing the weekly chemo, I was real good about taking care of myself. I haven't been that diligent since then. Mostly cuz I've felt great, and partly because I really enjoy everything I volunteer to do. Maybe subconsciously I'm trying to prove something? Like there's nothing wrong with me? But the point is, I need to take care of myself. I need to scale back. So PJ and I are both looking at my schedule and we are going to see where I can pull back from everything I am involved in. Yikes. I just want to do my part, in conjunction with the awesome therapy I'm getting.
Well, I'm fading, and need to get some sleep so I can get up and eat before 8am. Please send good thoughts around 2pm tomorrow, k? Let's kick this tumors ass once and for all. And if anyone has any bright ideas about how to handle this frickin insurance insanity, please feel free to call me.
Pastor Mary called me right after the results had come in and relayed to me Psalm 91 - the Psalm she read to me during one of my first prayer circles, in fact, this Psalm was the one she read that made me go out and purchase the NLT version of the Bible, the one I carry with me now. This Psalm 91 is by far, the most beautiful and comforting passages of the entire Bible. The whole thing is awesome, but I'll share the ending to tempt you:
Psalm 91:14-16 - The Lord says, "I will rescue those who love me, I will protect those who trust in my name. When they call on me, I will answer; I will be with them in trouble, I will rescue and honor them. I will reward them with a long life and give them my salvation."
God Bless -
Dina
MY LETTER TO AETNA10/13/2011
Aetna Expedited Appeals
FAX -1-860-754-0068 – 2 pages total
RE: Dina L. Mountcastle
Aetna Advantage Plans
Dear Sirs:
I am writing to you to appeal your decision regarding the handling of my recent claims. Please note I am a Stage IV breast cancer patient, currently receiving treatment at Cancer Treatment Centers of America in Goodyear, AZ. I was originally diagnosed in 2009 and was receiving treatment at AZ Oncology in Sedona, AZ. When my cancer returned in March of 2010, I sought treatment elsewhere, as I had exhausted my options for quality care within the rural confines of my living area. I now travel over 100 miles each way to seek the quality care of treatment from Cancer Treatment Centers of America, and have continued to pay my monthly premiums for Aetna coverage on time, and in full.
I do receive disability, as I have been undergoing chemotherapy treatment for my metastatic breast cancer while raising my 2 young girls, ages 6 and 3. I was unaware that I would automatically become eligible for Medicare coverage upon 2 years of me receiving this disability. That is due to my own naivety, but feel compelled to mention nonetheless. This was brought to my attention by my primary care physician located in my rural residence area through a letter saying they would no longer be treating me as I was now enrolled in Medicare, a program they do not accept. I contacted Aetna Customer Service and was informed that Aetna has moved into the #2 coverage position (or supplemental) and that Medicare was now in the #1 coverage position.
I do not wish to receive Medicare coverage. I have dis-enrolled formally in this program and have attached proof of this for your records. I can afford, and have the right to choose, to have my insurance coverage remain with Aetna, through the plan in which I have paid premiums into since 2007. The only way I can continue to receive the quality care I have been receiving, and deserve to receive, is through my Aetna health insurance plan.
I respectfully request Aetna return as my primary insurance carrier effective immediately so I may continue my treatment plan, allowing my life to continue in accordance to the specific guidance of the team of medical professionals assigned to me at Cancer Treatment Centers of America.
I appreciate your time and look forward to hearing from you promptly.
Sincerely,
Dina L. Mountcastle
dinakay@hotmail.com
928-277-3001 cell
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Tuesday, October 25, 2011
Friday, October 14, 2011
I'm gonna be "quad - ro - matic" !!!
Well as I suspected - the tumors on my liver are 'progressing'. I was prepared for this today - and to be quite honest, I am so OK it's weird. Maybe it will hit me harder later? Not sure. My awesome doctor went and spoke with the surgeon who did the therasphere procedure on me last fall (can you believe it's been a year?) before he gave me the results, because I am going to a consult with him for a new procedure called 'quadrasphere'. This is totally wicked - get this - they go in again, just like before, through my femoral artery and deposit these plastic beads - this time, filled with time release chemotherapy drugs. This cuts off the blood supply to the tumors then attacks the cancer cells, killing them. They do this to one side of my liver, then I go back for a second time for the other side to be treated. Crazy shit right? I go for my consult on Monday at 12:30 and could very well be whisked in for this procedure right then. We'll see.
Now, maybe because I've had my head buried in Proverbs 3 for the past week - I just can't stop reading it over and over I keep getting different things from it - I'm not sure - but I am genuinely excited about this. I mean, yes, I wish I didn't have to do this at all, but this is what I've got. I trust God so much with this, more than I ever have before. I know I'm in the right place, I know this team of people are exactly what I need, and I know this is exactly what I am supposed to be doing. And I'm not saying this because I feel like I have to convince everyone else - which I totally used to do - even recently. I'm saying this because I genuinely feel it. My blood work is once again perfect and get this - my liver function test is also, completely normal. If that isn't God taking care of me, what is? I mean according to this scan, here I am with these progressing breast cancer tumors on my liver, yet my liver continues to function normally, and I feel great. This procedure is ground breaking, and new to CTCA - this is so exciting! I no longer have to take the Xeloda, which I am equally excited about - my hands and feet just look like they've been chewed on by Madeline's rat - so I get a little break from that. Wahoo!!! So now my only stress is trying to get my kids where they need to be, watched and taken care of while I quickly go and have this procedure done.
PJ got to join me today - and it was great and weird all at the same time. It's been a year, a year - since he's been able to go to these appointments with me - so it was a little strange at first. On our way there this morning, in the car, I shared with him that I have these moments of fear. That I am sometimes tired of this, that I get pissed that I don't get the 'normal breast cancer' experience like most. Basically bitching a little, crying a little. Then he said something monumental to me - he started explaining that our family didn't work, operate, function - without me running it. He said that through all of this stupid cancer stuff, I still give 110% to my family, and that not only does everything get done, but I still make time to teach my children about being kind, loving to others, praying, thanking God, showing respect. That I didn't just sit and stew or not get out of bed, but that I made the effort and that he noticed. Huge. This was huge for me. Not that I have felt neglected, I haven't, but it was super nice to know he noticed. I love him so much. He's just the best person. Such a good person.
So there we have it - that's where we are today. I'll let you know what happens Monday - for now I am focusing my weekend - cheering PJ on tomorrow morning as he runs a 10K - luvin on my girls, helping my mom pretty up her place, going to church and helping Brittany make dinner Sunday night. As hokey as it sounds, I am full of hope, love, trust in God, and a renewed spirit this evening. I highly recommend you google quadrasphere - it is wicked cool - and I also recommend you read Proverbs 3, equally as wickedly cool. :-)
God Bless -
Now, maybe because I've had my head buried in Proverbs 3 for the past week - I just can't stop reading it over and over I keep getting different things from it - I'm not sure - but I am genuinely excited about this. I mean, yes, I wish I didn't have to do this at all, but this is what I've got. I trust God so much with this, more than I ever have before. I know I'm in the right place, I know this team of people are exactly what I need, and I know this is exactly what I am supposed to be doing. And I'm not saying this because I feel like I have to convince everyone else - which I totally used to do - even recently. I'm saying this because I genuinely feel it. My blood work is once again perfect and get this - my liver function test is also, completely normal. If that isn't God taking care of me, what is? I mean according to this scan, here I am with these progressing breast cancer tumors on my liver, yet my liver continues to function normally, and I feel great. This procedure is ground breaking, and new to CTCA - this is so exciting! I no longer have to take the Xeloda, which I am equally excited about - my hands and feet just look like they've been chewed on by Madeline's rat - so I get a little break from that. Wahoo!!! So now my only stress is trying to get my kids where they need to be, watched and taken care of while I quickly go and have this procedure done.
PJ got to join me today - and it was great and weird all at the same time. It's been a year, a year - since he's been able to go to these appointments with me - so it was a little strange at first. On our way there this morning, in the car, I shared with him that I have these moments of fear. That I am sometimes tired of this, that I get pissed that I don't get the 'normal breast cancer' experience like most. Basically bitching a little, crying a little. Then he said something monumental to me - he started explaining that our family didn't work, operate, function - without me running it. He said that through all of this stupid cancer stuff, I still give 110% to my family, and that not only does everything get done, but I still make time to teach my children about being kind, loving to others, praying, thanking God, showing respect. That I didn't just sit and stew or not get out of bed, but that I made the effort and that he noticed. Huge. This was huge for me. Not that I have felt neglected, I haven't, but it was super nice to know he noticed. I love him so much. He's just the best person. Such a good person.
So there we have it - that's where we are today. I'll let you know what happens Monday - for now I am focusing my weekend - cheering PJ on tomorrow morning as he runs a 10K - luvin on my girls, helping my mom pretty up her place, going to church and helping Brittany make dinner Sunday night. As hokey as it sounds, I am full of hope, love, trust in God, and a renewed spirit this evening. I highly recommend you google quadrasphere - it is wicked cool - and I also recommend you read Proverbs 3, equally as wickedly cool. :-)
God Bless -
Monday, October 10, 2011
Fall Break - Thank GOD!!!
I never thought I was a 'fall break' kind of gal - but alas. Here i am, in my jammies, watching my little ones play on the swingset in the backyard still in theirs, listening to the clothes clink and tumble in the dryer. Smell of big breakfast still in the air in the kitchen. Cup of coffee in hand. Luv it. Do I wish we could have gone somewhere as a family? Yes. I miss my total family experience, something I feel like we've lost as of late. Still adjusting to my niece living with us, and all that entails. But, blessed that we are able to acquire her into our family, and reminding myself of that daily.
Well, my life just seems to keep getting more and more full. I have found myself saying lately that I felt like everybody was taking little pieces of me, and when it was all said and done, there was nothing left for me. Not a good place. But, I was frantically but thankfully able to attend the Women of Faith conference in Phoenix a couple weeks ago and although it wasn't real 'restful' I found it to be incredibly inspirationally filling. It filled me up with weeks worth of spirituality. Just incredible. So amazing.
I have been tolerating the additional medication OK. My hands and feet are showing the signs of the meds now, extremely dry, red, cracked, peeling - really attractive. And my big toenails are once again revolting. Not sure if this is just me though - I remember having issues with my big toenails in the past, and maybe this is just magnifying them. Lifting, etc. So gross and embarrassing. I start to complain and think - well - if this is the worst, you can deal, you've been through so much worse - then I think - NO! I'm just pissed I have to go through ANYTHING - and the vicious cycle starts once again. Oy. It just never gets old - so exhausting. I go for my appt on Friday, and will have a full body CT scan at that time. According to my doc - should we see the tumor has indeed grown again, which, I believe that is has, we will talk an additional increase in medication. Also, there are a couple more theresphere procedure that have been developed since my last one, which was a year ago next month - can you believe it? Well, instead of radiation being distributed onto the liver, actual chemo therapy will delivered there and will dispersed on a time lapse basis. Pretty cool eh? He seems to think I will qualify for this protocol. I am hopeful. PJ is coming with me this time, so I am taking great comfort in that. He hasn't been to these appointments with me for almost a year now - because of his new job. Weird eh? I am excited to spend the day with him - like the old days of having our 'cancer time'. AAAaaahhhhh. Our sweet cancer time. Isn't that funny. Still searching for the blessings. Just keep searching, just keep searching - they are always there miraculously enough.
Once again my trust in Him needs sharpened a bit - I'm getting much better about it I must say. One thing I got from the conference I attended was the words of Andy Andrews - who is an AMAZING speaker. Funny, down to earth, and not at all the 'preachy' type. He gave me this nugget - as long as you are sitting here breathing, God is not done with you yet. As long as you are sitting here breathing, there is hope. I luv luv luv this. I used to pray for just enough - but now I pray for abundance - so I can share with others. Praying for just enough seems selfish - so I pray for abundance of everything, so I can share and love on others. I know God has something very important, very specific in mind for me - and I can't wait to be led to it. Jut gotta keep my God ears on so I can hear the Holy spirit guide me.
I'm taking a class at the local theater to assist me in writing my one woman show then I get to perform it in May of next year. This is good for me, not that I necessarily need assistance writing it, but need someone to answer to to make sure I take the time to write it in the first place. And I really love the space - it's an old church, over 100 years old, that has been converted into a theater. I know this is where I'm supposed to do this show. So, I am on my way.
My Ginger had a breakthrough seizure a couple weeks ago, so we increased her meds and I watch her closely. I'm also going to start buying gluten free stuff and start to phase out dairy. I need to try - so I'm going to. Slowly. Not easy, but they actually make all sorts of stuff now that is super yummy - no difference. We'll see. This seizure happened on Madeline's school campus, just after I picked her up. It was not as big of a seizure as previous ones, not at all, but lots of vomit and this is the first time she's had one in 'public'. It was so 'revealing' - didn't much care for that feeling. Still working through it.
I realized after seeing my good friend Martha, that I had never posted the final pics of my new boobies - well, here they are. You'd think after all I went through, they would be perfect, but they are just like every woman's real ones, and they don't exactly match. Go figure. But I love them, my husband loves them, and I'm so glad I went through the whole reconstruction process. It sucked, but well worth it. I miss not feeling anything, I don't think that will ever go away. But so happy to have boobies - and perky ones to boot.
That's it for now - will post once I have my appt on Friday and let everyone know the outcome. Thanks for hanging with me - I know I don't post as much as I'd like, but am blessed that I am so busy being a wife, caretaker, daughter - and mommy - my most favorite role in the world. Sometimes, I need to just be Dina, and I gotta find where I can fit that in. She is kinda the one who started all these roles, and she needs tended to, tenderly.
God Bless -
Well, my life just seems to keep getting more and more full. I have found myself saying lately that I felt like everybody was taking little pieces of me, and when it was all said and done, there was nothing left for me. Not a good place. But, I was frantically but thankfully able to attend the Women of Faith conference in Phoenix a couple weeks ago and although it wasn't real 'restful' I found it to be incredibly inspirationally filling. It filled me up with weeks worth of spirituality. Just incredible. So amazing.
I have been tolerating the additional medication OK. My hands and feet are showing the signs of the meds now, extremely dry, red, cracked, peeling - really attractive. And my big toenails are once again revolting. Not sure if this is just me though - I remember having issues with my big toenails in the past, and maybe this is just magnifying them. Lifting, etc. So gross and embarrassing. I start to complain and think - well - if this is the worst, you can deal, you've been through so much worse - then I think - NO! I'm just pissed I have to go through ANYTHING - and the vicious cycle starts once again. Oy. It just never gets old - so exhausting. I go for my appt on Friday, and will have a full body CT scan at that time. According to my doc - should we see the tumor has indeed grown again, which, I believe that is has, we will talk an additional increase in medication. Also, there are a couple more theresphere procedure that have been developed since my last one, which was a year ago next month - can you believe it? Well, instead of radiation being distributed onto the liver, actual chemo therapy will delivered there and will dispersed on a time lapse basis. Pretty cool eh? He seems to think I will qualify for this protocol. I am hopeful. PJ is coming with me this time, so I am taking great comfort in that. He hasn't been to these appointments with me for almost a year now - because of his new job. Weird eh? I am excited to spend the day with him - like the old days of having our 'cancer time'. AAAaaahhhhh. Our sweet cancer time. Isn't that funny. Still searching for the blessings. Just keep searching, just keep searching - they are always there miraculously enough.
Once again my trust in Him needs sharpened a bit - I'm getting much better about it I must say. One thing I got from the conference I attended was the words of Andy Andrews - who is an AMAZING speaker. Funny, down to earth, and not at all the 'preachy' type. He gave me this nugget - as long as you are sitting here breathing, God is not done with you yet. As long as you are sitting here breathing, there is hope. I luv luv luv this. I used to pray for just enough - but now I pray for abundance - so I can share with others. Praying for just enough seems selfish - so I pray for abundance of everything, so I can share and love on others. I know God has something very important, very specific in mind for me - and I can't wait to be led to it. Jut gotta keep my God ears on so I can hear the Holy spirit guide me.
I'm taking a class at the local theater to assist me in writing my one woman show then I get to perform it in May of next year. This is good for me, not that I necessarily need assistance writing it, but need someone to answer to to make sure I take the time to write it in the first place. And I really love the space - it's an old church, over 100 years old, that has been converted into a theater. I know this is where I'm supposed to do this show. So, I am on my way.
My Ginger had a breakthrough seizure a couple weeks ago, so we increased her meds and I watch her closely. I'm also going to start buying gluten free stuff and start to phase out dairy. I need to try - so I'm going to. Slowly. Not easy, but they actually make all sorts of stuff now that is super yummy - no difference. We'll see. This seizure happened on Madeline's school campus, just after I picked her up. It was not as big of a seizure as previous ones, not at all, but lots of vomit and this is the first time she's had one in 'public'. It was so 'revealing' - didn't much care for that feeling. Still working through it.
I realized after seeing my good friend Martha, that I had never posted the final pics of my new boobies - well, here they are. You'd think after all I went through, they would be perfect, but they are just like every woman's real ones, and they don't exactly match. Go figure. But I love them, my husband loves them, and I'm so glad I went through the whole reconstruction process. It sucked, but well worth it. I miss not feeling anything, I don't think that will ever go away. But so happy to have boobies - and perky ones to boot.
That's it for now - will post once I have my appt on Friday and let everyone know the outcome. Thanks for hanging with me - I know I don't post as much as I'd like, but am blessed that I am so busy being a wife, caretaker, daughter - and mommy - my most favorite role in the world. Sometimes, I need to just be Dina, and I gotta find where I can fit that in. She is kinda the one who started all these roles, and she needs tended to, tenderly.
God Bless -
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.
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 -
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 -
Friday, August 12, 2011
Mom when you get old, can I have your hair clip?
I'm helping Madeline brush her teeth tonight, and she says this. I have this clip holding my bangs back cuz I'm growing my hair out again, something I've been afraid to do since it started growing back, but now just feel like what the hell. Anyway, she says 'mom, when you get older, older than me - can I have that hair clip?' I asked her 'how old?' she says 'like, 70, or 80 - maybe 84'. I told her sure - no problem. Just recently do I think about living that long. That that is even a possibility. Funny though - I am constantly wondering if any ache or pain or fatigue or anything that doesn't feel 'normal' is my cancer, coming back, doing something bad. I don't think that will ever go away. It's just part of my daily thought routine. The thought comes, I dissect it like a frog, marinade it over and over in my mind till I get through it completely - searching for things to reassure me - taking pieces of conversations of other people, doctors, articles I've read, prayers I've said, that others have said for me, scripture, till I get my brain in a more peaceful place. I tell you, it is exhausting. Maybe that's why I'm so tired all the time?
So I've moved my mom up here - well, let me be a little more specific about that - my husband, brother in law, family friend and sister moved my mom out of her house in Phx, then I helped them all move her in up here. It ended up working out with the place down the street from us, and so far it seems to be working out perfectly. I know it was hard for my mom to move out of the house she has been in for 18 years, but having her closer to me up here is making it so much easier for us to help her, and it's so great for my kids and Britt too to have her so close. I'm picking her up tomorrow morning so she can come to Ginger's ballet class with me. Pretty cool I must admit. Pretty cool.
Brittany seems to be adjusting quite well here with us, and she goes and spends 2 days a week with my mom. Something good for all of us.
Madeline is a first grader now, and Ginger starts preschool at the end of the month. So strange. I can't believe I'm going to have both kids in school. I'm going to spend all my time at the gym - get these final 20 lbs off already.
My dr appt is next week - it was supposed to be today, but they had to move it. So I go in on Friday, Dr Nixon will do a physical exam, I'll meet with the team, then go up for infusion. I'll most likely have a scan next month, and we will see where we are. I think I'm handling the 3 Xeloda a day fine, I just have been so tired lately. Yes, this could be a hundred different things, gee - having 2 kids, a new 25 year old special needs niece incorporated in our family dynamic, my mother now moved closer, trying to be the wife and homemaker to my family, and being 42. It's almost not fair - what do women who are in my position who don't have cancer fighting drugs going through their systems on a daily basis feel like in the morning? Do their joints kinda hurt? Are they tired or are they just popping up out of bed with an automatic spring in their step? Do they get night sweats? Oy this frickin early menopause thing just SUCKS! I go through spouts of major hot flashes then not so much. Then I get this like, horrible gas like pains, what is that? What am I like 80??? Do I seriously get motivated to go to Walgreens to buy GasX ? So are these just getting older things or cancer things? I get so mad that I don't know. I recently saw Crazy Stupid Love, which I have to admit wasn't that bad. I do NOT do the romantic comedy thing, if I haven't stated this before, but this wasn't too bad. Anyway, I look at the main couple in this movie, and to be honest, other families, and the moms are able to just focus on their kids, their husbands, their families futures - and me, having cancer, it's like I don't get to do that the same way. There's this dark cloud over me when I go to do this. Is it wrong that I see it that way? How do I see it any differently?
Obviously I've been thinking too much this summer - I remembered as we started this school routine again a couple weeks ago how NOT GOOD I am when I'm not busy. I remember when I was working and single and I'd take some vacation time off, if I wasn't doing something, I'd just go a little nuts. Like my mind wanders to often and too far, if I don't keep in reigned in with some sort of task or event, it goes a little awry. So hopefully the routine will reign me back in.
Something else that has helped me as of late is music. I have always had such a strong connection to it throughout my whole life, and I've found some music that is just speaking to me on a level that has really brought me such deep peace and reassurance. Now, don't judge me here, but it has been the new Mandisa cd, Stronger. I'm telling you, first of all, this woman's voice is probably one of the most beautiful voices I've ever heard - and this particular cd is almost as if she was secretly stalking me for the past 6 months. Amazingly therapeutic. So awesome. I highly recommend it - at least for the title song. Check it out.
Well, off to chat with my hubby. Looking forward to my mom spending some time w/ me and Ginger tomorrow morning. Also, Britt has one of her SNAP dances and she is so proud to be taking my mom as her caregiver. In the end, I know if I just take the focus off of me, and put it on others, all will be right. It is what we are supposed to do - it is why we are here. I think maybe I've just been an emotional 'me-monster' as of late - geeesh D - get over it already. Oy.
God Bless -
So I've moved my mom up here - well, let me be a little more specific about that - my husband, brother in law, family friend and sister moved my mom out of her house in Phx, then I helped them all move her in up here. It ended up working out with the place down the street from us, and so far it seems to be working out perfectly. I know it was hard for my mom to move out of the house she has been in for 18 years, but having her closer to me up here is making it so much easier for us to help her, and it's so great for my kids and Britt too to have her so close. I'm picking her up tomorrow morning so she can come to Ginger's ballet class with me. Pretty cool I must admit. Pretty cool.
Brittany seems to be adjusting quite well here with us, and she goes and spends 2 days a week with my mom. Something good for all of us.
Madeline is a first grader now, and Ginger starts preschool at the end of the month. So strange. I can't believe I'm going to have both kids in school. I'm going to spend all my time at the gym - get these final 20 lbs off already.
My dr appt is next week - it was supposed to be today, but they had to move it. So I go in on Friday, Dr Nixon will do a physical exam, I'll meet with the team, then go up for infusion. I'll most likely have a scan next month, and we will see where we are. I think I'm handling the 3 Xeloda a day fine, I just have been so tired lately. Yes, this could be a hundred different things, gee - having 2 kids, a new 25 year old special needs niece incorporated in our family dynamic, my mother now moved closer, trying to be the wife and homemaker to my family, and being 42. It's almost not fair - what do women who are in my position who don't have cancer fighting drugs going through their systems on a daily basis feel like in the morning? Do their joints kinda hurt? Are they tired or are they just popping up out of bed with an automatic spring in their step? Do they get night sweats? Oy this frickin early menopause thing just SUCKS! I go through spouts of major hot flashes then not so much. Then I get this like, horrible gas like pains, what is that? What am I like 80??? Do I seriously get motivated to go to Walgreens to buy GasX ? So are these just getting older things or cancer things? I get so mad that I don't know. I recently saw Crazy Stupid Love, which I have to admit wasn't that bad. I do NOT do the romantic comedy thing, if I haven't stated this before, but this wasn't too bad. Anyway, I look at the main couple in this movie, and to be honest, other families, and the moms are able to just focus on their kids, their husbands, their families futures - and me, having cancer, it's like I don't get to do that the same way. There's this dark cloud over me when I go to do this. Is it wrong that I see it that way? How do I see it any differently?
Obviously I've been thinking too much this summer - I remembered as we started this school routine again a couple weeks ago how NOT GOOD I am when I'm not busy. I remember when I was working and single and I'd take some vacation time off, if I wasn't doing something, I'd just go a little nuts. Like my mind wanders to often and too far, if I don't keep in reigned in with some sort of task or event, it goes a little awry. So hopefully the routine will reign me back in.
Something else that has helped me as of late is music. I have always had such a strong connection to it throughout my whole life, and I've found some music that is just speaking to me on a level that has really brought me such deep peace and reassurance. Now, don't judge me here, but it has been the new Mandisa cd, Stronger. I'm telling you, first of all, this woman's voice is probably one of the most beautiful voices I've ever heard - and this particular cd is almost as if she was secretly stalking me for the past 6 months. Amazingly therapeutic. So awesome. I highly recommend it - at least for the title song. Check it out.
Well, off to chat with my hubby. Looking forward to my mom spending some time w/ me and Ginger tomorrow morning. Also, Britt has one of her SNAP dances and she is so proud to be taking my mom as her caregiver. In the end, I know if I just take the focus off of me, and put it on others, all will be right. It is what we are supposed to do - it is why we are here. I think maybe I've just been an emotional 'me-monster' as of late - geeesh D - get over it already. Oy.
God Bless -
Friday, July 15, 2011
The Results Are In
Well shit. Results came in that the tumor on my liver is growing again. Slowly, but growing. Doc has increased my meds to an additional pill a day. I currently take 1 Xeloda in the morn and one at night, now he wants me taking 3 a day. The interesting thing is, my blood tests are all normal, great actually. My liver function tests are normal - improved actually from my last visit last month. I looked at Dr. Nixon and said "well that doesn't make sense does it?" Dead pan answer of "Nope". Then I replied - "well, I just don't make much sense do I?" Repeated dead pan response - "Nope". I have to say, I know I'll never know, but I wonder what my exposure to all that shit in the air on 9/11 may have played a role here in how my cancer is behaving. I have the most common kind, the kind they know the most about, yet it is not behaving as it does in other people. I looked at him, because quite honestly, I am feeling very realistic and practical about this - not emotional at all - thank GOD - I asked him worst case scenario, when do we pull out the big guns and I go to the Taxol crappy chemo route again. He said "Oh, that wouldn't happen for a long, long time". Good. Glad we have time to find some other alternative. Then he showed me with his hands how large my liver is - it's pretty big! (figuratively speaking here, I'm not bragging like 'whoa! look at my big liver!' I think everyones is basically the same size I just didn't realize how big they all were) then he indicated to me the size of my tumor - again, some relief here.
I'm fine - and again, kinda amazed. I feel fine, all the other tests read that I'm fine - isn't that strange. What a test of my faith - seriously. Now listen to this little gem of an experience:
I go for my massage with chatty Cathy, right? I walk into the massage room and she starts in on the asking me a question but when I answer I basically get interrupted while she talks about herself, you know these people, right? Anyway, she sits down with me and I tell her that I'm really just looking for a shoulder and neck massage as that is where I carry most of my tension. She says, and I shit you not: "you haven't met with your doctors yet, have you?" I'm thinking, you know this lady, everyone is this whole building knows my schedule, that's kinda the cool thing about CTCA. I reply, no. She continues "so you haven't received the results of your CT scan then, right?" Duh - no. She says, "well, I read them and it seems there is something indicated on your spine, did you know this? I want to stay away from this area and just focus on your upper back area". Wha???? I am immediately in panic mode - more spine mets? What? So I just muster a nod, say OK and we move into the massage, which now, I don't even remember. Long story short, she was wrong. Can you believe it? Wrong!!!! I had a feeling that maybe she misread and mistakenly saw scar tissue from where my previous bone mets were as new ones, but wasn't sure. That's exactly what she did. Yes, I did tell my case manager and no, I won't be having a massage again. What a huge, scary moment. What an idiot. Oy.
So it was an exciting day. Once again, I'm really just living off how I feel. I do what they tell me to do - I trust my docs - and I know I am in good hands. And plugging along I go.
Spending some awesome time w/ my mom, and emotional too. I'm looking forward to spending time with her this weekend. What a gift. And I get to just put this aside and carry on. Not in a denial way, but in a I have a life to live kind of way - I mean, I do. Yes, I did hug my Madeline a little longer then normal when I saw her. She has such a peaceful energy, it's healing to just be around her.
Well tired - must sleep. Prayers for healing please, have a great weekend.
God Bless -
I'm fine - and again, kinda amazed. I feel fine, all the other tests read that I'm fine - isn't that strange. What a test of my faith - seriously. Now listen to this little gem of an experience:
I go for my massage with chatty Cathy, right? I walk into the massage room and she starts in on the asking me a question but when I answer I basically get interrupted while she talks about herself, you know these people, right? Anyway, she sits down with me and I tell her that I'm really just looking for a shoulder and neck massage as that is where I carry most of my tension. She says, and I shit you not: "you haven't met with your doctors yet, have you?" I'm thinking, you know this lady, everyone is this whole building knows my schedule, that's kinda the cool thing about CTCA. I reply, no. She continues "so you haven't received the results of your CT scan then, right?" Duh - no. She says, "well, I read them and it seems there is something indicated on your spine, did you know this? I want to stay away from this area and just focus on your upper back area". Wha???? I am immediately in panic mode - more spine mets? What? So I just muster a nod, say OK and we move into the massage, which now, I don't even remember. Long story short, she was wrong. Can you believe it? Wrong!!!! I had a feeling that maybe she misread and mistakenly saw scar tissue from where my previous bone mets were as new ones, but wasn't sure. That's exactly what she did. Yes, I did tell my case manager and no, I won't be having a massage again. What a huge, scary moment. What an idiot. Oy.
So it was an exciting day. Once again, I'm really just living off how I feel. I do what they tell me to do - I trust my docs - and I know I am in good hands. And plugging along I go.
Spending some awesome time w/ my mom, and emotional too. I'm looking forward to spending time with her this weekend. What a gift. And I get to just put this aside and carry on. Not in a denial way, but in a I have a life to live kind of way - I mean, I do. Yes, I did hug my Madeline a little longer then normal when I saw her. She has such a peaceful energy, it's healing to just be around her.
Well tired - must sleep. Prayers for healing please, have a great weekend.
God Bless -
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