MMmmmm - chemo pellets........

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

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 -

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 -