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I have breast cancer and am a snappy dancer

Monday, December 19, 2011

She doesn't have any arms yet mom!

Ginger says this is why Charlie (our chihuahua) can't jump up onto my lap. I think it's funny.

So, can I say pain? Can I say liver pain? How weird is that to even type out, liver pain. I didn't even know your liver could hurt - so weird. This last week has been painful - living on pain meds, and finally, I think I found the right concoction - 1 pain pill + 2 Advil = BINGO!!! So I did that finally on Sunday and finally, I think I found some relief. I mean, I'm still functioning, I don't want to paint the picture that I'm just lying there in the recliner all day, snickering to myself in a pain med trance and randomly laughing at nothing, I kind of do that anyway (just not in a recliner) I am functioning just fine, it just hurts is all. But finally, relief. Today was monumental - just Advil this morning, and didn't need a pain pill till 1pm. Yipee!!!

Whenever you read anything, you obviously form a mental picture in your mind, and I guess I feel the need to let everyone know that throughout this whole ordeal, I was able to rest in the hospital, and then the weekend day or two upon my return from the hospital - but for the most part, I run around just like everyone else - taking my kids to school, Brittany to her functions, running errands, volunteering, etc. All my stuff and my life continues to happen - despite any 'procedure' I endure. Maybe a little slower at times, but I'm still behind the wheel of my minivan singing Christmas carols with my girls. And ya know what? That's exactly the way I like it. My mother likes to say 'take it easy on yourself' or 'you need to rest more and take care of yourself better' and I guess it's your mom's job to say these things - but, just because I am out being a mother, aunt, wife, friend, member of my community - doesn't mean that I'm NOT doing those things, ya know? I really had to think about this - I mean, I am very, very in tuned to my body - I think most cancer patients are - I know when I need to stop, I know when I need to rest - I know when I can push it a little further and when I can't - and I respect my body telling me these things - I have to, or the consequences could literally be fatal. But, I'm not going to stop living - not ever. And I guess I need to admit, right here, right now, that I am a hopeless night owl. I am my fathers daughter. I will stay up late watching the most ridiculous things on tv, just because. I have no reason for it, I think it's in my DNA. There - I said it - I feel much better now.

Got my Christmas cards out - which, becomes more and more important again as a cancer patient. If people you don't talk to on a regular basis not hear from me with the card, they may think I died or something. I'M STILL HERE!!! CHRISTMAS CARD CONFIRMS IT!!! And I'm so looking forward to watching my girls on Christmas morning. They are really getting it this year, and watching them watch Christmas come is by far one of the coolest parts about being a parent. We have lots of traditions we've started, maybe too many - we have our elf of course, Elfie. Then we do 'What God Wants For Christmas' which is an interactive nativity scene we do together as a family and it's so awesome in teaching my kids about the birth of Christ - I wrap Christmas books and we open one a night and we read it together by the tree, we sprinkle reindeer food on Christmas eve out in our front yard. Yes - I am Christmas CRAZY. And now my kids are too. Something must be working because I've caught PJ singing Christmas carols like 3 times already, and that NEVER happens. Welcome PJ - welcome, finally, to my madness. I ordered one of those microphones that plays Christmas music and also turns your voice in an elf voice - have you seen this thing??? It is hilarious - PJ and I haven't even shown it to the kids yet - I hid it in our closet and we were in there tonight playing with it - he was trying to sound all Barry White sexy in this elf voice, and I grabbed it and started saying 'I'm a chemo elf, my liver hurts' in this elf voice. Hilarious.

I digress - so now I wait to see if they scan me or not - I guess there is a possibility they will not, which wouldn't make much sense to me. How else would they know if this is still working or not? In any case, waiting to hear back from scheduling to book that next appt. Knowing I get a break brings me sweet peace. We need to allow my liver to heal and repair itself after these invasive procedures. Liver failure was always a possibility with quadrasphere, something I didn't mention before, but it was. Still is I guess since these chemo filled beads continue to release for 2 weeks following the procedure. But again, I am careful to respect my body and the messages it sends me on how to tend to it.

Each Christmas since my diagnosis means something different to me. I continue to grow in my relationship with Christ, and I continue to draw closer to my family, and what 'holidays' are really all about. I look back at Christmases past, and can totally see how I just didn't 'get' it then, but, in retrospect - I only knew what I knew. I was all about buying the right gift for the right person, going way overboard with my kids, making sure the pictures on my Christmas card were the best, and I would be so stressed, so pissed off all the time, rushing trying to get everything done, and just making everyone miserable around me - only to lead up to Christmas morning and suddenly just expect everyone to 'hurry up and enjoy this!!! it's Christmas!!' And, I'm ashamed to admit it, but I used to really be concerned what people were getting me for Christmas! Now, I don't have this mastered yet, I'm still a work in progress, but this year I'm just so excited to be with my family. I look at my kids faces, I look into the eyes of my husband, I hold my mothers hand in mine, and I know it sounds corny, but I'm just so blessed to be in their presence - to spend Christmas with each other - and share food, smiles, tears, gifts, love, each other - that is what I am just so excited about. I just love Christmas, and each year, the reason is just a little different, a little deeper from the year before. Sounds like a God thing to me.

Merry Christmas

Dina

Sunday, December 11, 2011

Oy, my liver - that smarts!!

Well, 2nd quadrasphere is done. I have to say that I was really glad that I knew what to expect this time, and super glad I was put under for it as well. However, wanna hear something ironic? Remember the whole morphine pump that was supposed to make everything better? Well, it works much better if its plugged in. Can you believe it? I really think this is hysterical to be honest. There I am, pushing this button, like 4-5 times, not hearing anything, and nothing happening because, you got it, it wasn't plugged in. So, once we got that figured out, then it did seem to help me quite a bit, however, everytime I would wake up out of a morphine sleep, I'd feel really great and rested, then immediately have to throw up. So I once again was sick like, 3-4 times this time again. But again, I knew what this felt like, so I was ready for it, and moved right through it. I must admit as well, that I prayed all the way through these moments too, something I didn't do last time because I was way too scared. This too helped. By Fri morning, I knew I had to switch from Morphine to Percocet - and that seemed to do the trick. No more throwing up, thank God. Now, the pain, the liver pain I'm experiencing this time, is much more intense than the last time, so I am trying to manage that.





Also, this is strange, but everything I drink tastes sugary - makes sense I guess considering what the function of your liver is - I just think it's so interesting how this organ, and having major trauma happen to it, can effect your overall body operation. Managing this pain has been a challenge this weekend, a real challenge. My husband, children, niece, mother and friends who have watched my kids and fed me have literally been a God send. Where would I be without these gifts God as given me?





I'm going to try to get back into the saddle again tomorrow, but I am still not moving around real fast yet, which is just real frustrating. The deal is now that I will go back in a month, get scanned, see what the deal is, and 'take a break' which, is fine w/ me. I will welcome a break, if it is safe for me to do so. My doc says we need to be careful not to hit the liver to hard too fast because of the possibility of liver failure, minor detail. I just want this thing gone. I'm so over this.





So I've heard from Rep Paul Gosar, and Senator John Kyl, and Senator John McCain kinda blew me off. But the other two are going to bat for me, and I'm thrilled. I keep praying that I will continue to receive this ground breaking treatment, and stay with this awesome team of people who just seem so focused on fighting this thing with me. I get such an 'army' feeling from them, ready to conquer this on my behalf.





I'm fading a bit now, but wanted to check in and let everyone know I am ok, and am adequately medicated, oh my am I medicated. I'll write more later this week.





God Bless -





Dina

Wednesday, December 7, 2011

Twas The Night Before Quadrasphere..........

Well, here we go again. Scheduled for another zap of the cancer cells tomorrow morning. Pre-op at 8am and procedure at 9. I am so optimistic, it's strange. I'm actually a little excited. I think because I know it's working it a huge part of it, but also because I'm feeling so good these days, maybe for the same reason. Who knows. I'm just full of hope.

Alright, I am scared too. I can't help but be afraid to think I am going right back in there to feel super shitty again, for like, 14 days afterwards - but at least I know what the worst feels like. And again, knowing that it's working, makes the blow a whole lot more bearable. Plus, as soon as that fear creeps in, gotta let God creep right in and take it. Practice makes perfect.

We had a great time at the Polar Express this past weekend. It was so great. The girls were just so excited, and I think the best part was one of the most unplanned things. We got there, had a great lunch at a local diner, checked in to our room, picked up the tickets, played in the snow, got into our jammies, took the train to the North Pole, had cookies and hot chocolate, met Santa, had dinner, then settled in for the night. Then, when we are all tucked into bed - PJ and Ginger in one bed, and Madeline and I in the other, I turn the TV onto 'Its A Wonderful Life'. The 4 of us laid there and watched the whole thing. Madeline asking questions the whole time, and really getting into the story. Of course one of her first questions was 'why doesn't this movie have any color mom? why is it in black and white?' but once we got past that, she was way into the story line. I have to say it was one of the coolest life moments I think I've ever experienced. I am so blessed. I have just the best little family ever.

I need to share a passage from a book I've been reading off and on here for awhile, and this passage is one that I read before I went in for my scan and results of the quadrasphere. It's one of those ironic moments - well, ironic is probably not the right word. In any case, here it is:

'God will speak to you too - straight to your heart. I can't promise everything will be okay. It may be; it may not be. But I promise, based of the faithfulness of God, that you can be okay. Just don't pull up that anchor. And never let go of the rope.'

I just think this is awesome. I needed a reminder like this. I wish I could write more here, but I should probably get to sleep since we have to hit the road by 6am. As of midnight I can't have anything to eat or drink till my procedure tomorrow. I'm starting to think maybe Taco Bell wasn't the greatest choice for dinner before this procedure where I don't eat for 2-3 days. Hmmmm. I'm going to go drink a big glass of water.

I can't thank you enough for your prayers, and if you could spare a few more, send em up around 9am tomorrow, cool? Bring It On!!!

God Bless -

Dina

Friday, December 2, 2011

Joy To The World...the death of cells......la la la la la

So that is the final word after my scan last week - tumors are stable and dying. The awesome word again was used, necrosis which means via Microsoft 'lookup word search': the death of cells in a tissue or organ caused by disease or injury. Praise God!!!! I have to say - it was soooo difficult to walk in there and know that I needed to trust Him no matter what the results, but I give Him all the credit for the results. The left side, where the largest tumor sat like a big fat gross guy (I picture the snot guys from the Mucinex commercials - weird, right?) is dying - and the small ones he shot with the beads on the right side are as well. There was one tiny one that he did not get that was on the right lower side that is a bit bigger, but that is what they will address when we go back in and shoot it again next week. I can't imagine they will just go in for that tiny one, I have a feeling they will shoot the left side again, which, I am totally prepared for now. After discussing how awful this first time was, we came up with a plan to maybe fix somethings this time in. I'll be put under for it, yay, and then hooked up with a morphine pump right afterwards in recovery so it is all in place when I go up to my room. Plus, I went for a check up with my onc yesterday my dietitian said that my liver may not react as dramatically this next time. Kinda makes sense I guess, I mean when I had my very first chemo treatment my body completely rejected it - duh - it's poison - so it makes sense my liver would react the same way. I'm just so ready, now that I know it's working, to get in there and have them zap it again. Bring it ON!!! I can't tell you how blessed I am to have these results. Many don't, and I know that. I remember when I received these similar results after my first check up after theresphere, and I've decided I'm not comparing this experience to that - I can't. What I can do differently this time, is believe my healing is possible, and give Him all the credit for it. That is what I'm working on now. Also, my blood work yesterday showed by white and red blood cells completely normal which is awesome, my tumor markers down, and my liver enzymes much improved from the last set of labs. Yay! And I ask them too "Is this normal normal or cancer patient normal?" They say its normal normal. Yay!

So, I had mentioned I'd been struggling with my new role of taking in my special needs niece. I have. But I think I have made a huge jump with this struggle this week that I feel I need to share here. My dear friend who has special needs daughters, introduced me to a place called YEI - Yavapai Exceptional Industries and it is, mind blowing. It is a facility that subcontracts with companies to do piece work, thus finding employment for these special needs individuals. They provide jobs for every need level, and gives them an opportunity to earn a wage, albeit small, an honest wage and take part in society. They work at their own pace, with their friends, have lunch together, take breaks, go bowling, to the Y and exercise, have Hawaiian shirt day, go to the movies - such great stuff - all together, with each other. These are the same people Brittany has met through her SNAP program, so she already knew a greater portion of the people there. She craves purpose, and it is awesome to suddenly be able to provide her with a peer group. I filled out a buttload of paperwork and it all went through I guess, and she started this past Wed. For now, she will go 2 times a week, and it just gives her such purpose. I can't tell you how cool this is, and had no idea such programs were available for the special needs individuals in our community. Fighting with DDD right now as I was denied that benefit too, but I have appealed that as well, and we will see where it ends up. That will help with rides and respit care and just general funding and assistance, so let's see if I can get that pushed through too. Oy! What is with me and government programs!! I can't get out of one for me, and can't get one in place for my special needs niece!!! Doesn't make any frickin sense to me at all. Good thing I don't take NO for an answer, no matter which direction it goes.

We are now getting ready for the Polar Express this weekend, just the 4 of us are going and we are excited. Good snow yesterday, so it's going to be adequately Christmassy - and we are excited to usher in the Christmas spirit this way. Super excited.

Thank you all for your prayers, they have been answered. I am so blessed. What a perfect Christmas gift, I couldn't ask for anything more. I do ask for continued prayers for continued healing as I head into this next quadrasphere. There very well may be another after this. (rule of 3 - how oddly appropriate for me eh?) And all I read, over and over, and I get something different every time I read it, is Proverbs 3, Psalm 91 and now I've added Daniel 3. I am just in awe of such trust. I humbly hope to replicate this trust every day of my life. What an awesome release.

God Bless -


Dina

Monday, November 21, 2011

Alert The Press!!!

Well, I did it. I sent out approx 15 press packages to the, well, the first 15 influential people I could think of to tell my insurance story to to see if anyone could possibly help me put the heat on Aetna and get them to change their mind. I have now appealed 3 times and they still won't budge. Wanna hear something scary? Technically, I don't have any primary health insurance right now. I did what Aetna advised me to do, declined Medicare and sent them proof, now they won't go back to the primary position. I hope at least 1 of my packages gets read by someone and they are moved to do something, anything. So frustrating and scary. But at the same time, I know everything is going to work out exactly as it is supposed to. I keep doing and moving in the direction that feels right, and I know it will all be fine. I have no explanation for this feeling. I feel like I am being 'led' through this I guess. That's the best way I can explain it. Cross your fingers please.

I'm feeling better - just get tired easily - but also think that is because I haven't exercised since the procedure and I'm so mad about that. I know I would have more energy if I could just get out and walk for awhile, something simple like that. PJ and I have worked out a new schedule next week that he take Madeline to school twice a week and I try to get a walk or bike ride in. We'll see. Best laid plans. Today was my first day with no pain meds, and that has been rather nice I might add. Gee, that may have been adding to me feeling so tired. Duh.

I go in for my CT scan on Wed to see how the quadrasphere went. And I have to talk about this for a moment. I have really been fighting such dark thoughts this past month, since my procedure. It's almost like my brain has gone right back to where I was when I initially took in my diagnosis. So scary, so depressed, so negative. I think about me dying, how much I want to be here for my husband and give him the life and marriage and wife he deserves, how much I want to be the mother to my daughters throughout their adolescence and young adult lives, how much I just want to grow with my family. I've never wanted anything more in my entire life, than to be alive to be a wife and mother. So simple one would think. So simple I thought before cancer. Again, pain meds probably didn't help but fuel this kind of thinking as well. In any case, today I turned a corner and I think it had a lot to do with the message at church this past Sunday. Pastor Jack preached about the burning furnace story in the Bible. I'd never heard this story before, but the gist of it is, there are these 3 guys with strange names who won't bow down to this ginormous gold idol of the king, because they follow God's commandment that you will worship no false idols, right? Well this pisses off the King who orders them to be thrown in the burning furnace. They state and I'm paraphrasing here, that they know that God can save them, but whether God saves them or not, they trust Him and all that He stands for and still won't worship a statue. Now, this is HUGE to me. Pastor Jack also talked about how we bargain with God sometimes, and how he thinks that probably makes Him laugh. I admit, I have done this. I have tried to bargain with God - and it usually sounds something like this, while I'm praying: Please God cure me and I will show everyone I meet what a great healer you are - I will spread your message far and wide. Now, I guess if you're gonna bargain, this is probably a pretty tempting one, even to God - but - it's a bargain nonetheless. What I'm getting at is this - He already knows my life plan. He already knows what happens to me. Any bargaining from me is just insulting. I need to trust. Trust Him enough to know what is best for me. I don't wait around, I move, hopefully in the direction He wants me to go in, and the rest - only He knows. Well, in case you're wondering how the story ended, God did save them, they exited the furnace without a burn on them. This convinced the King that maybe they were onto something here with this God thing, and ended up joining their faith. This is Daniel 3 in case you wanna check in out.

So here's my thing, I've talked about trusting God a bazillion times throughout my blog - but this time it rings a bit differently for me. I mean, I'm kinda running out of options here in the 'treatment' arena - and that makes me a bit nervous. It's been really great to be on these pills all year long this past year and have my months of 'denial' cuz that is pretty much what they have been. I knew the pills weren't working - they didn't work before, and I was taking a LOT more before. So trust kinda has a different meaning to me now. Trust means I know He knows what will happen to me. He already knows, and whatever that is I must trust that. Yikes. Putting it that way is some scary shit right? But I oddly find comfort in this. I hold onto His word that he wants me to have long, fruitful life, and I will try to make each day, each moment as fruitful as possible. That's all I can do. I mean, this isn't any different than an other challenge in this life, right? We move in a direction that we 'feel' is right, a direction we feel He has led us to, and check it out and see if it works or not. Same here, plain and simple. Deep breath - breathe. Whew.

My stress level is still pretty high. With my niece Brittany, I've really been praying for her and for me to be what she needs me to be for her. I've never done this before, so I am struggling here too. I tend to get frustrated easily lately, and have been praying for me to come to her with more compassion and love, and patience. Living with a special needs individual just changes your whole family dynamic. We just haven't settled in to it yet.

Then my mom is going through her treatment and I wish I could be there more for her. Right now I'm taking care of some financial stuff for her, so that takes time. Just want so badly to take better care of her.

My kids on the other hand, are AWESOME!! Ginger is taking ballet and loving it and Madeline just finished soccer and she loved that too. They are all jazzed about Thanksgiving and starting to go Christmas Crazy (like their mommy) so that is fun. We are doing the Polar Express this year so that will be fun too. Lot of fun holiday traditions coming up for us so that makes me happy.

Point is, I don't know what is going to happen on Wed. I don't know what this scan is going to show. God does, and as long as I stay focused on Him, I will be just fine, no matter what the results may be. Do I pray for total and complete healing? You bet your ass I do - everyday, on my knees, with tears streaming down my face, but I trust what He gives me, and I will not waiver.

Quadrasphere or no quadrasphere, I made 50 mini loaves of homemade pumpkin bread over the past 4 days. I should sell this stuff it is so incredibly yummy. Happy Thanksgiving all - please cross your fingers on the letters I have sent out - and prayers for Wed.

God Bless -

D

Thursday, November 3, 2011

The Burn Means It's Working????

So - I haven't posted since my quadrasphere because, well, to put it bluntly, it KICKED MY ASS!!! I must say, it was by far the worst recovery I have gone through with any of the treatment I have received in the past. I don't know if I was not thinking, was in denial, not sure. But this was horrible. The procedure itself went well. In fact, my surgeon said that once they had done dousing the left side of my liver with the chemo beads, there were some left over, so they went on my right side a bit. So there may have been a kind of 'double whammy' affect here as well, who knows. The day of the procedure, I don't really remember much to be honest. I just remember being in such horrific pain. It was liver pain, something I have never felt before. Now, as it was explained to me by one of the doctors, this procedure essentially killed a portion of my liver. Doesn't sound too pleasant, eh? The chemo beads not only killed the tumor, but it killed the portion of my liver on which the tumor sat. They also cut off the blood supply to that portion of my liver, another ouch. I can only explain the pain as the feeling of the most horrendous heartburn, acid stomach feeling, but higher up in your gut, like right below the middle of your breasts. I refused the pain meds initially (big mistake) and found myself vomiting Wed night then again Thursday morning about 3 times. They kept me an additional night to make sure I was OK. But I didn't eat for literally 3 days. I was so weak. Once I finally said yes to the morphine, it seemed to move along a bit better. Well, it's morphine - what wouldn't right?

I have to say, this experience scared me. Scared me in a way that shoved the seriousness of what was happening to me right to the front of my brain. It did this to both PJ and myself. I would look at PJ's face there in the hospital, and he just didn't know what to do to help me. I'm not the best patient either, I just want everyone to leave me alone. And I wasn't having any of anyone. When I left the hospital on Friday, I couldn't make it 50 feet without needing to sit down I was so weak from not eating. All I wanted to do was sleep. I'm better now, but still needing to take pain meds on a pretty consistent basis. It's like this whole thing brought back all the 'chemo' feelings back from when I went through them back when I was originally diagnosed. Like I was right back there again, only worse. Totally sucked. Which then of course plays the mind game with you as well. But on that front, I've been pretty good at making sure my thoughts line up with Gods word. Practice makes perfect. That and Psalm 91. (thanks Mary)

Next step is to scan me in 4 weeks, then do the right side 2 weeks after that. So we will see where we are then. Obviously going to ask for the morphine to be on tap when they wheel me in next time.

Halloween was great, its been so awesome to watch my girls grow up. They are just so precious to me. I know I'm their mom and am bias and all that crap, but my connection with my girls just continues to flourish and grow. They are such lights to me. They both have been consistently coming in to our bed at night to sleep lately. And I haven't really complained about this a bit. I find my girls, snuggling with my girls, so - healing. It's like they communicate with me in this non verbal way that is angelic, for lack of a better word. My heart is at such peace when I am with them. I feel like I'm not describing this correctly at all. It's just something I feel when I'm with them.

My insurance battle continues. They came back and denied my appeal. So I'm going to post my response here. Time to bring out the big guns. Scary part is, I essentially have NO PRIMARY INSURANCE coverage right now. I can't believe this. I'm currently constructing a letter to send out to everyone and anyone who will listen. I am so scared that CTCA will stop treating me. I can't stop this treatment - I just can't. I know nothing else but to fight with all I have. I should be fighting for my life, not my insurance coverage.

Getting sleepy here - and Madeline just snuck in. :-)

God Bless -

Dina

11/4/2011


Customer Resolution Team
P.O. Box 14462
Lexington, KY 40512

RE: Dina L. Mountcastle FAX: -1-860-754-0068
Case Number #2011101800836

Dear Sirs:

In reference to your response letter of 10.18.11 to my request for appeal, please note the following as my formal appeal of your position:

The mere wording of the exclusion in reference, ‘Non-Duplication of Medicare’ clearly defines itself. This exclusion is meant, and understood to mean, that when coverage is originally put in place (2008 in this case), the policy is not written to give duplication of coverage should Medicare be in place. In this case, it was not. Therefore, this exclusion, while meaningful, does not apply.

It is not stated within the wording of the exclusion ‘at any time during the policy term’ for which Medicare coverage may come into play. This exclusion clearly is meant as a safety to ensure duplication of coverage is not collectible by the insured.

There is no duplication of coverage. There was not at the inception of this policy, and there is no duplication of coverage now. The premiums paid to you from the beginning of the policy back in 2008 reflected that of primary health insurance coverage, and your policy has responded accordingly up until recently. The premiums continue to be paid to you presently reflect the same. Therefore, Aetna needs to respond as the primary health insurance coverage.

As I await your response once again, please note you will be copied on letters explaining this case in detail addressed to my state representatives, government officials, local and national media, our President, and my attorney. My life is too precious to me and my family to allow Aetna to force me to take a government program I do not want, didn’t request, and don’t pay for. It is wrong. It is unconstitutional.

It is astounding to me that I have to fight for my coverage at the same time I’m trying desperately to fight for my life.

Sincerely,


Dina L. Mountcastle
dinakay@hotmail.com
928-277-3001 cell

Tuesday, October 25, 2011

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

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 -

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 -

Tuesday, September 13, 2011

9/11 10th Anniversary Speech

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

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

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

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

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

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

My Water bowl Runneth Over.....

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

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

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

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

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

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

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

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

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

God Bless -

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 -

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 -

Yogurt Ranch Dressing

So yay for me - 5.4 lbs lost in 9 days. Yay! PJ and I are doing the fat smash diet and detox has taken me over the hump. Feeling great. Tired, but great. I've also gotten the guts up to take some of these classes at the Y - I did a bosu class, which, thank God I only used a step instead of a bosu ball because I think I would have not only hurt myself, but the people who formed the tight knit circle of 20 somethings with tight butts around me. Bastards. Anyway - I'm pretty proud of myself - saying no to carbs though is tough. Didn't realize how much I really really really wanted a cracker. Just one! Bah.

So here I sit once again at CTCA for my monthly 'let's see where we are' check up. I think my mindset on this whole thing is either just adjusting to these appointments or I'm getting thicker skin or I'm trusting God even more or I'm just too busy to worry about it. Probably a combination of all of these things. We did blood work and a CT scan to see what is happening with my liver. Again, praying for status quo. It just seems to me that God has work for me to do on this earth, so with cancer, without cancer, managing my cancer - He's keeping me around for awhile longer to tend to things. My husband, my children, my niece, my mother. Anyone else want to come on board? It's funny, the things you just 'do' - I never realized this was such a window into the souls of people - to see what they are really made up of, ya know? Not the things you intentionally do - to get attention, or accolades, or payment or applause - the things you just do because it's the right thing to do - you don't even have to think about it. When I tune into that piece of me, I feel so close to God - it's amazing. Trust me, I've had the 'doing things for the thank you' moments, tons of them - we all do. But to be honest, those moments never fill me up as much as the blessings. This is just what we do. So whatever the outcome again, I'm ready. I know He's got me on this, whatever it may look like from this perspective - from His? Perfect.

I really feel that we all have something to contribute to this world. Some talent that has been bestowed upon us to share with the world. It's just a matter of finding it, feeling it, then sharing it - in whatever form that may be for any of us. Here I am, on the verge of my 42nd birthday, and I'm not sure what it is. I mean, I have a good idea of the general gift, I just am not sure how to apply it to life yet. How to share it the way I'm supposed to. Maybe I'm thinking too hard about it. I just recently decided I was not going to renew my insurance licenses - now, this may seem silly to you, however, I had been in the insurance industry for 20 years. 20 years!!!! Talk about an industry defining who you are! It totally did - and now? I don't really want to do that again. I mean I did it for a job way back when, then it just turned into a career 20 years later. It did right by me, don't get me wrong, I wouldn't be anywhere close to where I am without this career path, so I am grateful - but now - if I had to choose what I got to do with my life - it would not be insurance. So what do I choose? Being a mommy first and foremost, and the heart and spirit of my family. Leading them into cool places on many levels. Then, I'm not sure. I know I have a big mouth - so that is definitely part of it. And I'm kinda bossy - but in a good way! (bossy people always say that) So I'm sure I'm sure I'll figure it out. We'll just have to see.

So I'm staying here in Phx for the weekend to help pack my mom up to move up to us next month. Came down this am with Britt and Madeline, left Ginger with a sitter then she and daddy get a weekend all to themselves. Looking forward to a weekend with my mom, and help her make this a positive transition, it must be hard, leaving a house you've lived in for 18 years. I can't even imagine. I love her so much, and am so excited to have her closer to me. I can help her so much better.

I'll post results tonight, going to have a massage now before the results. I had no idea they did these here!!! Although the lady who does them for me is quite the talker - I'm going to have to tell her politely to be quiet please. Otherwise I feel compelled to carry on some sort of trivial stupid conversation with her then before I know it, it's all over. I like them here because they have this special 'boob' pillow that has holes for my boobies. Totally great, I'm going to try to fashion one of these for myself so I can lay on my tummy again. Implants are not quite as squishy as my old saggy boobies were. Not that I'm complaining! ;-)

God Bless -

Dina

Sunday, July 10, 2011

The Giving is the Gift

Wow. I hadn't realized how long it had been since I had posted. I think maybe I was in denial a little - ya know? Maybe if I didn't write about what was happening then it really wasn't happening. Wouldn't that be an awesome power? (meaning, if you're having the 'what super power would you want if you could have one' discussion) In any case, a lot has been going on here needless to say. I a nutshell, Brittany is now officially moving into our home, so our family has grown to 5. Funny, PJ and I always wanted a 3rd child, I am constantly reminded how God has a plan all along - so here we are. Next, my mom will not be moving in with us here in my humble abode, as much as I was looking forward to re-enacting the Charlie and The Chocolate Factory bed scene. They found the drug that worked on her blood clots so she is doing much better - although her recent scan has shown her cancer is progressing. Therefore, she has agreed to move up here close to us (down the street actually if the place we found pans out) so that will make it way easier for me to help her, for her to be close to Britt, my kids, blah blah blah. I know this will be a difficult transition for her, but so glad she agreed to make this move.

I didn't think I could ever make the transition emotionally that you make with your parents when they get older - how you switch roles - I didn't think I was ever mature enough I guess - but low and behold, it has happened. I look at this situation as an outsider and think "wow - this is so adult Dina, you are in such an adult situation here". I still feel 33, maybe 34 - is that normal? Is this how our parents felt? Weird.

For me? Well my pneumonia is finally gone - thank you Jesus. And I go in on Friday this week for a CT scan to check out where my tumor growth is. Again, praying for status quo. I'm feeling really great, making exercise and diet a huge priority which I have to say has been my saving grace throughout this whole ordeal. I am a major stress eater, and PJ and I both have made a consorted effort to go in the opposite direction with this. It has given me more strength, purpose, and it also is making me put my health first. One thing that was the hardest thing for me to come to grips with was telling my mom that my family and I were my first priority. That is just NOT what I would have done before cancer. But, clearly being aware of my own mortality, and knowing how essential it is for me and my family that I take care of me mentally, physically and spiritually - this needs to be my first focus. This only helps me tend to others effectively. Wow - that sounds so, 'adult'. Yuk.

Madeline and Ginger are having a great summer - full of gymnastics class, camping, summer movies, swimming - all the things that make summer fun. We won't be able to financially afford NYC this fall as we had anticipated - which is a huge bummer. With what has transpired within the last 3 months, it just doesn't make sense this year. But that is ok - we'll make it there soon enough. I'm a sucker for the Thanksgiving Day Parade - I'm one of those kooks who actually went to it, multiple times when I lived there, and cried like a baby at the Sesame Street float. We will bring my kids there soon enough. Oy do I love that Maria & Louis!!!

I think I've mentally progressed past my disease finally. I'm no longer envious of other moms like I was before, I still get scared, but nothing like I used to. It's more of a fear of how my life will need to change if something medically has to change with me more than anything else. My boobs are finally finished and they look AWESOME!!! I am officially a 38D - and now that I'm losing weight, guess what? Not losing it in my tits first! YES! So frickin awesome. So I bought a swim suit and bras this summer - it's been so great to be on the 'finished' side of this journey.

I'm tackling a huge one now, something I learned today actually about myself. I think I've been living my life, subconsciously of course, like there is this day out there, someday, when I"ll get to just sit and relax and have everything I want. I am not sure if I'm describing this right, but I really think that I've been living like this - or when I was going through the scariest moments of my treatment, mourning the loss of this possibility. What am I really looking for here? What kind of life expectation is this? I guess what I realized today was, just the mere way of being me - everyday - which entails striving to give more than I receive - is exactly what life is all about. Now I'm not talking about this 'live in the moment' or 'life is too short' kind of crap, I get that. What I'm talking about is the actual act of giving to others, that being the gift to yourself. Like I think I thought subconsciously, mostly but not all the time, that my giving would eventually end up in some sort of 'reward' or something. Wha? That's messed up - cuz I totally missed the fullness of my own heart when I just give straight from it. Does that make sense? Well, it has totally enlightened me today, and caused me to get back on the horse here and start writing again, giving again, loving again, from a completely different place. There's no big reward at the end of the tunnel that we keep waiting to achieve with money or things or crap - it's right there inside us all along. We just need to open up. Frickin cool. Hope I explained this right.

Well, I have some amazing pics to post so I have to go sweet talk my hubby into scanning them in so I can post them here tomorrow. I can't believe Madeline starts 1st grade next month, Ginger will be in preschool, and I'm turning 42 in a week. 42. Ya know what? For the first time, so happy to say I'm having a birthday - they mean something totally different now.

God Bless -

Dina

Wednesday, June 1, 2011

Wire Hanger Shoulders

This seems to be where I am carrying all my stress as of late. In my shoulders - ever feel like there is a wire hanger strewn through your shoulders? That's exactly how I feel lately. I'm blessed that my cancer is stable - but I do need to keep in mind that it's not gone, it's just not growing. So the attention I need to pay to my own physical and mental well being is essential - but wow - that doesn't mean the world stops while I tend to these things. Wish it did. Wouldn't that be awesome? I would put a huge red button in my minivan - right next to my cell phone compartment - and I could press it when I wanted everything to stop - just stop so I could catch my breath, finish my thought, listen to a song, breathe deeply, or yes, curse out the many idiots that drive around this town that go 10 miles under the speed limit for no apparent reason whatsoever. But no - no button.

PJ and I asked my mom to move up here, in with us. It's not safe for her to be by herself, and it's just the right thing to do. My words came back to me this week - an exchange I had with Madeline last year sometime, where she was given a toy by her Sunday school teacher that they thought was hers - and it wasn't. I made her take it back and she didn't want to - for obvious reasons. I looked at her and said - "the right thing to do is sometimes the hardest thing to do - that's why not many people do the right thing". I have no idea where this came from - but I was blessed to say this - and now, well, I'm trying to do the right thing. I have these visions of our house turning into the house in Charlie and The Chocolate Factory where we live in this tiny little house and we all sleep together in the great big bed. Creepy. But we need to get the clearance from the pulmonologist (sp?) as I don't want the altitude to make her worse - gotta make sure it's safe. Then to boot - PJ's mom is now homeless for some reason and wanted to move in with us as well. WTF?? We don't have a lot here - we have this small 1600 sqft home in Dewey Az - where are we supposed to put all these people? We are fun people, yea, but we aren't THAT fun! Maybe we are - hmmmm. I will try to be less fun. There is WAY too much background to go into about PJ's mom - let me just say that no, we didn't offer, we don't have room - we can't. End of story.

I'm up to my eyeballs in legal paperwork for my mom and for Brittany. I know what to do - just trying to find the time to do it all is my problem of late. On the good side, watching Brittany take flight in some of these fabulous programs up here has been very rewarding. It's like she's finding out who she is - pretty awesome.

I sat with my mom at her dr appt on Tues and she had the guts to ask the scary questions. The 'am I going to die' question and the 'how much time do I have' question. Ironically, he didn't have any answer - which is so true - because as he said 'only the man upstairs knows when it is our time' - refreshing. However, he said that with my mothers type of cancer the survival rate at the time of diagnosis was 12 months - that was 3 years ago - so there you go. I heard this as a good thing, but I'm not sure how my mom heard this information. Surreal. I was trying to tell PJ that I need to distance myself emotionally from this in order to function within this situation. The moment I let myself connect to the 'feeling' my mother is possibly experiencing I completely fall apart - I put myself in her position and I remember, quite vividly that fearful state of mind. If I allow myself to go there and actually feel what she is feeling, I lose myself completely. So I stay focused on just being there for her - not taking over, just being there. Needless to say - I am praying a LOT lately. Well, I pray a lot anyway - my prayers are just more specific as of late.

One cool thing that happened recently is I have been invited to audition to sing with the contemporary band at my church. Now, it has been a LONG time before I felt excited like this about anything. I felt like I used to feel when I would get the part I wanted in a play or musical I auditioned for - just super excited and like a little kid. Now I don't know what will come of this, but I can't tell you how excited I am to just be asked, and to get the opportunity to go sing with people I have the utmost admiration for - pretty frickin cool. I audition tomorrow, so excited.

My pneumonia is 90% gone according to my doctor at CTCA. He gave me a month leash and I'll go back middle of next month for another xray. I've been back on the antibiotics they had me on before, and I am feeling better. Still some tightness in my right side, but better. Had my 3rd and final tattooing done on Tues so we will make sure that heals and then I should be all done with my reconstruction. Yipee!!!! I really love my new boobies. They are super terrific. PJ seems to agree as well ;-)

I've lost 21 lbs now - feeling so frickin awesome and confident. Getting back to exercising now and eating better, making better choices. Feels so good.

That's it for now. Have to share this amazing God moment - I had recently picked up a prayer book for a friend of mine and was flipping through it before I wrapped it up to give to her. I automatically turn to a prayer called 'Hospitality' - and it has this beautiful prayer then related it back to this verse, Romans 12:13: 'When God's people are in need, be ready to help them. Always be eager to practice hospitality.' Sometimes we just need to forge ahead in this life - look ahead and just do it. Just frickin do it. Don't hesitate, don't doubt, don't bitch, don't think 'what if', don't second guess - just do it. This is what we must do.

God Bless -

Friday, May 20, 2011

Learning To Listen

So here I sit at CTCA awaiting my latest chest xray to see if this pesky pneumonia is finally gone. On the horizon after this? I venture off, barring I am fine, (well, not really) to check into a hotel room for the night because I need to see my mom who I haven't seen since she was released from the hospital on Mothers Day. We need to do some paperwork stuff, bank stuff, blah blah blah. She is now at home, with in home health care visiting her as she is not steady on her feet and is on pain meds so driving is out of the question. She developed additional blot clots in the other leg - so they are monitoring her blood levels as she is obviously on blood thinners. I can't stay at my moms, which is a major bummer, because I have been ademently told by my doctors I need to stay away from cig smoke as it could trigger my pneumonia once again. We have Brittany up with us and I have blessedly been able to get her dental work underway, covering 9 appointments. She seems to be adjusting well, this is all different for her too. I have also blessedly been able to get her involved in some programs for the developmentally disabled and she really seems to be enjoying that. Thank you Jesus for leading me to my community of church and friends - they have all helped me make this happen for Britt - it's pretty cool to watch.

I have to be honest. I have my moments where I am completely and utterly overwhelmed. I feel pulled in every direction, and it when it happens, it's usually around like, 6-7pm - I feel as if I could scream at the top of my lungs for the world to just stop, just stop for a moment and let me catch my breath. Oddly enough, this feeling hasn't happened as often as I would have expected. There is a deep sense of peace within my heart that this is exactly what we are supposed to be doing. My husband and I look at each other and our hearts, as corny as that sounds, are in such agreement on this. I love Brittany, don't get me wrong, but for the longest time she (and I'm going to be brutally honest here) frustrated the hell out of me. See, I knew Brittany before she was diagnosed with brain cancer at age 3 - and she was just as normal as any other little toddler. I think I always thought, or maybe just wished, that she was still that healthy little girl. Radation treatments into a developing 3 year old brain is what has done her the damage she lives with today at 24 - not the brain cancer. Ironic isn't it. In any case, and I have no other explanation for it because this literally has come out of nowhere - when all this crap went down with my mom and I had to swoop in and get Britt, all of that frustration - 20 years of it people - was gone. I see her with new eyes. I see her as this child of God who deserves the same chance in life that any of us deserve. And, what a gift she is to me, my family, my children!! What is this teaching them about loving each other!!! I can only thank God for this - only He would be powerful enough to turn 20 years of anger into humility in an instant for me. It is crazy amazing. Now, onto the guilt. Oooooohhhh I am a guilt MONGER - oy. I am organizing help for my mom down in Phx beacause I just can't be in two places at once, much to my frustration. I've got her covered for another 3 weeks - but after that, I'm not quite sure what is going to happen. I pray she gets strong enough to be on her own again, time will only tell. We all have to work together, including her, to get her stronger and better. We've got a long road ahead of us. I literally am thinking day by day right now. Which is good, but very dangerous as I forget to see what's coming up on my calendar. So look, Dina, look at what's coming up you dork, just DEAL with the now. Oy again.

Now me - I've got to monitor this pneumonia thing so carefully - it is serious, I know this. I have to do my part to take care of me - so when I get tired, I need to try and rest, even if it is for 5 minutes (not kidding - 5 minute power naps are doingme wonders these days). And I can't begin to tell you how much Jesus keeps me in line - again, as dorky as that sounds, He does. Again, my morning shower moments, He spoke to me this week showing me how amazing He is in orchestrating the people in my life to help me handle what is currently on my plate. I can't imagine where I would be in all of this without the people I currently have in my life. I know that my heart would be filled with anger, fear, bitterness, blame, just plain nasty - I can remember that Dina quite vividly - and she has been taken over by a trusting, peacefilled, faith driven person that really just wants to love on people. It is WAY less work and WAY more rewarding to be this Dina - so bring it all on, I am not afraid, I will take on cancer, pneumonia, help my mom through her cancer, be the caregiver to my neice, whatever gets thrown my direction - these are all tests of how I choose to react to them and how much I am willing to trust Him. My mom used to say to me, "Dina, when you get up in the morning, you get to decide what kind of day you are going to have". That's why we were given free will - she's right.

Yesterday was just a pretty awesome day in general. My last MOPS meeting for the year went great - we had sooo much fun it was like a 'mommy playdate' with 50 women. Awesome!!! Then I took Brittany to a function through a group called SNAP where they all met for dinner and a movie. She was so excited. I actually cried when I dropped her off like she was one of my own. Then, I come home and my husband comes up to me and tells me he wanted to read something to me. Now here I am thinking it's going to be some dirty email he just received - but no. He pulls me aside to read to me Proverbs 31:10-31. Have you read this passage?? I never have, and to have my husband read this to me, tears filling his eyes, I can honestly say I have never felt more blessed in my life. What a wonderful gift my husband is to me. Through all this crap - and yes, sometimes it all very much feels like crap - there is light. Ya gotta just look for it. READ THIS PASSAGE IT IS AMAZING!!!

So now I have to go downstairs, see what's cookin with this xray and hopefully get my infusion today. I thank God for my life everyday - in the shower. So now you all know that I am a clean person. And I've decided it can be a much better day in general when I decide to just smile at people. Kinda lightens the load - and any little bit helps in that arena these days.

God Bless -