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I have breast cancer and am a snappy dancer

Thursday, January 27, 2011

Not What I'd Hoped

Well, the CT scan has revealed the largest tumor which was shrinking and dying 2 months ago, growing again. And, unfortunately there is an AND, there appears to be additional tiny tumors appearing around it. So, back to the drawing board. We have decided to go back to the Xeloda, the pill form of chemotherapy but on a different dose. A daily dose of 2 each day - rather than the previous 8 pills a day for a week, then a week off blah blah blah. This is supposed to provide and consistent nonstop flow of chemo, without the horrible side effects I experienced before. I also have started the estrogen blocker, which I knew was coming. So there we have it. Here's the strange part - my liver function is completely normal, my tumor markers are low (not that that ever mattered), my bones are healed pretty much, it hasn't spread anywhere else and I feel great. I asked my doc if this was normal, and he looked at me and said 'Dina, nothing about you is normal'. I then told him that this was not the first time I had heard this comment. We laughed.

Here's the deal - am I disappointed? Yes. Did I logically think theresphere would do it? Yes. This shows me that there is no logic to this disease, or at least, to me having this disease. Everyone seems baffled. I'm lucky that I am so healthy everywhere else, my body is obviously fighting this with everything it has - this tumor is just stubborn. I am not going to go to the dark place, or have a pity party, or change any plans I have made for me - I will not let this disease rule my life like I have in the past. I need to be careful not to tread into the 'denial' part of this thinking, I need to remain proactive and assertive, but I will not let it dictate my mood, my life, my purpose on this earth. Maybe I'm just getting used to it, but this is where my head is tonight. So we have to get the paperwork in order to send to the pharmaceutical company to get me signed up for financial assistance for these pills again, and I already have the estrogen blocker to start taking tomorrow.

I was blessed enough to speak with my friend Pastor Mary tonight and we talked about this at length tonight. Here's the odd part: I feel fine. I feel great actually. My doc knows this, and looking at everything else about me, tells me that he is 'treating the scan'. Hmmmm. How curious. You know what? I'm going to go out on a limb here and say that I feel healed. If he needs to treat the scan to match how I feel, then so be it. I trust the Lord, and in my opinion, I am already healed.

So, ironically I hear this new song on the drive back home tonight, and I need to share these lyrics - it is pretty frickin awesome - I totally put this on my ipod already


This Is The Stuff
Francesca Battistelli
from the album This is the Stuff - Single


I lost my keys
In the great unknown
And call me please
'Cause I can't find my phone

This is the stuff that drives me crazy.
This is the stuff that's getting to me lately.
In the middle of my little mess
I forget how big I'm blessed

This is the stuff that gets under my skin
But I've got to trust You know exactly what You're doing
Might not be what I might choose
But this is the stuff you use

45 in a 35
Sirens and fines
While I'm running behind

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed

This is the stuff that gets under my skin
But I've gotta trust You know exactly what You're doing
Might not be what I might choose but this is the stuff You use

So break me of impatience
Conquer my frustrations
I've got a new appreciation
It's not the end of the world

This is the stuff that drives me crazy.
This is the stuff
Someone save me
In the middle of little my mess
I forget how big I'm blessed

This is the stuff that gets under my skin
And I've gotta trust you know exactly what You're doing
Might not be what I would choose but this is the stuff You use

This is the stuff You use


I'm off to figure out how He wants me to use this.
God Bless

Smiling Through My CT Scan

I can honestly say this is the first time I've done this. I am sitting here at a computer station at Cancer Treatment Centers of America because they ROCK and awaiting my dr appt with my team to get the final results of the theresphere procedure. I was in here this morning around 10am for my CT scan, and I have to say, I was smiling, almost giggling, through the entire thing. I have no idea why, it's just that I am filled with so much joy today - it's weird. Considering I had reached my breaking point last night and blessedly, my husband caught on and suggested quite sternly to go take a moment in the bedroom to myself. Normally I would dismiss this suggestion and say that I was fine, but that little voice told me to push through the pride and go take a moment. I didn't even have the door closed and was in tears. Sometimes we just need a good cry, I think it is really just as simple as that. There is so much going through our brains that we reach a 'full capacity' mark and we need to deflate. I picked up my Mother's Bible cuz that was the closest and went back to the index to find just the right verse to, well, I don't know, bring me comfort? Explain what I was feeling? I don't know - I just went there. I looked up STRESS in the index and for those of you who have one of these amazing Mom's Bibles, go to page 619. It did not direct me to a Bible verse, but a devotion. I would post the whole thing here if I had it on me, but I don't - but I will share this portion of it with you as I shared this on FB last night:

‎'When we cry, we admit our human frailty to ourselves and those around us. We express our finite limitations as mothers and as women. We acknowledge our weaknesses without relinquishing ourselves to their power.'

Amazing. I felt cleansed and refreshed in just enough time to hear my little ones sobbing 'Mommy! Mommy!' outside my bedroom door. It took all of about, 10 minutes. So I guess I just wanted to share that coming from someone who overthinks EVERYTHING - sometimes we just need to give ourselves 10 minutes and just cry. Then take a deep breath, thank God, and return to life. Keep it simple stupid. (i say this to myself, certainly not calling anyone stupid)

I arrived here this morning, and was almost skipping into the building. I don't know what these results will bring, but I do know that I am feeling the most centered, physically and spiritually, than I have ever in my life. I am so much closer to complete trust, it is really and truly amazing. I sit in these waiting rooms, and I see the faces of all these other cancer patients, and the ones I am most touched by are the ones who look down - the ones who try not to look me in the eye - the ones who are afraid. I just want to reach out and hug them and tell them it's ok - so I try hard to catch their attention and then just give them a subtle smile. I don't care if they smile back or not, because I know what a difference a smile made to me when I was where they are, fear wise, and it was like a dim light was shone into my heart, as corny as that sounds. Fear has no place, no home in this disease - yet it seems to be the first one to walk through the door - right? It is human to fear, but God is bigger than this - and it is in that we must trust. It takes practice, lots and lots of practice - but pretty soon, it becomes second nature. I'm so happy to be closer and closer to that place.

Someone recently said to me that I was 'the face of hope' to others facing this disease - and I was blown away by this. Me? Ironically enough, I sometimes think that I'm the LAST person people want to see when they are diagnosed or find themselves close to this disease simply because of the seriousness of my specific case, but then I have to remember - I am walking around being me just as much, if not MORE than I was before I knew I had this - I guess that is a good thing to see. I'm not the preachy type of person, I think I can say a lot more in simply reflecting his love than to come out and say "Hey! You better give this to God and get that relationship with Jesus thing goin for ya Mister!!!" Not really my style. If me simply being around people and reflecting what my spirituality has ignited in me gives people hope? Then I'm doing exactly what He is intending - whether they believe or not. I think people get this on many levels - I often pray that people know God's presence in whatever form they are able to understand it. Be it a gentle breeze, a sudden rush of enthusiasm you can't explain, or suddenly finding yourself in the short line at the DMV - whatever works, right?

This week, and it's only Thurs, has been filled with moments for me that have tested my faith - in people and circumstances. I am so happy to discover that my instincts have changed. It sucks that it was cancer that got me to the place where this change started to occur, but it did. I obviously am rambling here because I've got time to kill before this dr appt - so I'll wrap it up with this: I had a random mental picture this morning as I drove into Phx of me standing in soft green grass, sun beaming down from above, my children standing next to me looking up at my face, smiling, and me looking up to the heavens, smiling. Not intentionally leaving PJ out of the picture here, but what I think this means, I don't really know, is the lined connection in this vision that just keeps going and going and I take great, great comfort in that. If I were looking down at my children the connection would only go back and forth and not go anywhere, but looking up makes the connection go right through us, as one. Alright, I'll step down once again. PJ always tells me that I have to be up higher than everyone else, I assure him it's only because I feel like I've been 6 feet tall my entire life. I know nothing else. I'll keep everyone posted.

God Bless

Tuesday, January 25, 2011

Good News Travels Slow

The most comforting words I received this past week - 'Dina, bad news travels fast, good news always travels slow'. So true - finally got a call yesterday from my pediatric neurologist that Ginger's MRI was normal. Thank you God. I held my heart and just cried tears of joy. We still don't know the WHY but at least we now know what it's NOT and that, is so frickin awesome. We can now breathe a $1700 sigh of relief. Now, I didn't actually speak to the dr on this, so I haven't connected with him as to his thoughts on what to do for the future, but I have to say, I have already seen a dramatic change in who Ginger is with the small adjustments I've made in raising her since her last seizure Dec 19th. I think sometimes we just subconsciously assume the 2nd child is the same as the first - she definitely is not. I make her eat, she drinks very little milk now, I keep her routine very consistent, I tune into her when her surroundings get too chaotic for her, and I can totally tell when that happens. I thought at first it was just wishful thinking on my part, but after these results, I know my gut is right on this. Looking back and her seizures I've realized some other commonalities that made me make these changes, and I just feel, in my gut, that they are working. We'll see. For now, I am so happy and praising God for this news. Thank you.

I have my next appt at CTCA on thurs - my insurance will only pay for a PET scan every 3 months, so I will be having a CT scan and then we will have the final 12 week results from the theresphere. I will meet with my team of drs and see what the deal is. The beauty of CTCA is I get the results right then, no waiting. So cool. I figure worse case scenario is they will recommend I get the other half of my liver done - but best case scenario is its gone and we're on to the estrogen blocker. I am ready for whatever they have to throw at me. I have been feeling so wonderful lately, and have really made some strides to my life to promote a healthier lifestyle, both physically & spiritually. I am reminded each day how precious this life is, and what a privilege it is to be here.

So I was in my plastic surgeons office today with Ginger, and he has booked me for my final appt for reconstruction - the tatooing of the aereolas. I go in on Feb 15 and if I am healed enough, I go right in for the tatooing. Anyway, Dr leaves the office after my exam and Ginger is sitting on the chair in the exam room playing with the sample silicone implant. I look over to her and she presses her face into the implant and makes this huge fart sound into it. We both started laughing so hard, it was awesome.

The message from this past Sunday's sermon has really stuck with me. The phrase was 'God is bigger than the boogeyman'. I try to remember to give my hurt, my pain, my frustration, my fear - all those emotions to the Lord. What I forget, is to hand the very thing that causes me these things over to Him. Complete trust. When I have remembered to do this, He always takes care of me. So right here, right now, I am handing Thursday's appt to Him. I trust Him completely. Whew! Now I can go paint my toenails!

God Bless -

Tuesday, January 18, 2011

My Cancer is Better than Your Cancer

It occurred to me while in the shower this evening, that when people approach me with their cancer stories, they usually end it with something like ' but I never went through what YOU'VE gone through' or something like that - and I think I've been taking this completely wrong. I was hearing this to say "your cancer was WAY worse than mine' but what I think they have meant is that they didn't mean any insult to me by trying to compare cancer stories. Now, to me - cancer of any kind just plain sucks. So comparing - as much as we can't help ourselves from doing - is just silly. Everyone is different and the smallest of cancer cases can hit someone like a load of bricks then on the other hand the worst of cases someone can seemingly fly through - so - my point is once again, as I think I've done like a buttload of posts on this subject - it's all relative. Cancer just sucks for anyone who has it - and we just can't compare my cancer to your cancer to his cancer to hers. It just doesn't work like that. I suppose we subconsciously want to find some comfort in someone else's experience - something to tell us 'its going to be ok' - problem is, we would then have to listen to ALL of the comparable stories, and who wants to do that? I'd only want to pick and choose the ones I would like to compare myself to, and that is just not realistic. So, we walk our own path. Holding His hand in ours, some days tighter than others. And I try to remember myself in fact - to walk along side my fellow cancer survivors, and hold their hand with my other hand, some days tighter than others, instead of compare myself to them. We need each other - for better or for worse.

So Ginger had her MRI on Friday and I have to say, it was a pretty awful experience. They had to put her out for this, and I thought they would do this by IV but alas, no. The IV went in AFTER they put her out. They used the mask and I held her as she wrestled to break free - it was awful. I actually held it together until they laid her down on the MRI machine and told me to kiss her goodbye - that's when I lost it. She looked, well, it was just awful. I waited in the waiting room and just started texting my friends to pray, and I just sat there and cried while I did it. They almost didn't let me in the MRI area because of the stupid 'clips' I have in my arteries after my theresphere - didn't realize those were metal and the MRI machine could possibly dislodge them - hmmmm, that would not be convenient would it? They figured out a way to make it work obviously, but I was so pissed that this suddenly became about me - and this was NOT about me, this was about Ginger. In any case, the amazing staff at PCH came and got me when she just started coming out of the anesthetic, and I had a feeling this was not going to go very well. In normal everyday Mountcastle life, if I wake up Ginger before Ginger is ready to wake up, she is a complete bear. I mean, bad. So I had a sneaky suspicion that this was not going to go well - I was right. She cried, she screamed, she kicked, scratched you name it - and she did all of these things at once, slowly increasing her energy level. I finally got her somewhat calmed down, and luckily she got into the car and was asleep within 5 minutes of pulling out of the parking lot and I just got on the freeway and started driving. By the time we got home, she was pretty much completely back to normal. I felt like I had been put through the ringer. This mom stuff sucks sometimes. I just wanted to do it for her - it was heart wrenching to see my baby being scared like this - I can't even explain this. So now, I wait. I called yesterday morning then again this afternoon. Nothing. Trust Dina, trust.

So far the exercise is going great, and I am feeling stronger and stronger each day. I've missed this the past 2 years, and looking forward, I don't believe I will have the 'surgical interruptions' I kept having last year and the year before that. I'm feeling really great. If all goes well, I think I'm going to try to do the Komen 3 Day Walk this year. We'll see - but I think I could really do it this year. I've wanted to do this the past 2 years, but for obvious reasons, was not able to push myself when it came around. This year will be different. It already is.

I'm back taking a WOW class, and my MOPS is going great - and the past couple of weeks I just have decided that if there is someone I want to spend time with, or something we want to do, we need to try to just see that person, do that family thing, see that movie, blah blah blah. Life is just too short to keep making excuses for not doing what fills us up - ya know? I'm not talking about doing this in an irresponsible way, you can't lose focus on being responsible - but the moment I realized that perhaps I have lived my life subconsciously abiding by what I thought I 'needed' to do rather than what I 'wanted' do to - it's like a light switched on. I WANT to love on my family and friends, I want to make time to give back, I WANT to spend more time in the Word, yet we push these things aside for things we feel we HAVE to do. Interesting, and I'm trying to make strides to change my mind on this - we'll see.

Please keep the prayers coming for my Ginger. My gut is telling me everything is fine, and this test, this very expensive $1700 test, will simply put my mind at ease. I'd keep paying this off a thousand times over for sweet peace of mind. Trust Dina, trust.

God Bless -

Thursday, January 13, 2011

Dina's Stand Up Cancer Act

So I just finished doing a talk at the Yavapai County Shriners Club dinner. This is actually a funny story how this came about - my father asked me weeks ago if I would come and talk to this group for their first combined meeting and, seeing I had given my 'testimony' a couple of times I thought that that was the kind of 'talk' he was referring to - a faith/cancer walk kind of talk. So I agreed. Then I got a copy of the email that went out to all the members saying Dina Mountcastle was going to do 'stand up'. wha? yikes - I haven't done stand up in like, 20 years, and trust me - the material I used way back then, although I still find pretty funny myself (beef jerky is timeless material) I didn't think would be received all that well by shriners. And I wasn't really ready to make my cancer that funny. In any case, I told some funny stories about my dad, my hubby, my kids, then talked about my cancer walk, my faith, a little message about living life int he present and ended with a slide show. It seemed to go over well. I did try to make cancer funny - I need to work on this a little harder though. Right now, I think the only people who would feel comfortable laughing out loud to that humor would be other cancer patients. Hmmmm. Might be onto something there. I know I have a message to give, just trying to figure out how to find it. These things help though - and I felt so blessed to tell my story and share wonderful pictures of my beautiful family. I am so proud of my family.

So I take Ginger to PCH tomorrow for her MRI. We have to check in and 11 and her test is at noon. She will need to be completely sedated, so I am working through this and ready to be the strong mama tomorrow. Please keep her in your prayers. I am hoping we finally get some answers - to find out what it's not hopefully. Trust Dina, trust.

Madeline is now sick too with some sort of tummy bug - so it looks like we will have a quiet weekend at home. When it rains it pours.

I am feeling fine - I did actually order a glass of wine this evening before my talk, but had just a couple of sips. Didn't taste right - which is good. I think it was probably cheap wine, but still, I made a choice and that felt good. To be honest, I think it was indeed the alcohol I was consuming that was giving me the flushing of the face - so there ya go. My body telling me to knock it off. Message received. Bummer.

It's kind of a catch 22 I think - I am so thrilled to be off of everything for the past 12 weeks, it almost makes me forget my disease. It's been like a mini vacation - and I am loving it. What comes along with that however, it all the stupid crap that enters my mind and I start worrying about. All that crap I realized when I was knee deep in my disease was a complete waste of time slowly creeps back now that I have been blessed enough to take a couple steps back from it for a short time. I suppose that is the frickin humanness of all of us - and maybe just being aware is enough to swing it back in the other direction, I hope so.

I'm a bit tired and need to go check on my chicks. One thing I do remember everyday - is how lucky I am to be the mommy of Madeline and Ginger, and the wife of PJ Mountcastle. A reminder to myself to keep it simple stupid. Everything you need is right there in front of you.

God Bless -

Dina's Stand Up Cancer

Sunday, January 9, 2011

How Fast Was I Going????

Well, I'm feeling pretty good actually. I will have one more month here before I go back on an aromabase inhibitor (estrogen blocker) so I am soaking in each and every minute of this - and loving it. I had discussed w/ my onc when I was in on the 30th that I had been on Femara and had really bad joint pain. We spoke about the monthly shot - faslodex - as I had heard the FDA has just approved it for double its dose - and he said that that would feel very much like the Femara, and that the shot itself was quite uncomfortable to endure. He said he will most likely put me on arimidex, because they released the patent on it and I can get it for like $10 a month and it does the same as Femara with less joint pain. I'll still HAVE joint pain, just hopefully a little less severe than with the Femara. We'll see. How cool though that I have a full team of dr's to work with to try to counteract any of these upcoming side effects - so frickin cool. I feel like I'm in such good hands. It is a nice, relaxed and peaceful feeling. Haven't felt that in a looooong time. Went to Phx to have my top checked out and it's not infected. Just not healing on one side as fast as it should be. So I'm just tending to it and it's actually doing really well. So that is a HUGE blessing.

So it seems that I was in need of a lesson here last week. The good Lord above needed to teach me about patience I believe - the hard way. I got a speeding ticket. I have never, ever, received a speeding ticket and yes, I am the wife who bitches at her husband that he is going too fast, I am embarrassed to say. Well, not anymore. Ginger was having one of her temper tantrums Fri morning, and these are quite a show if I must say so - she will cry so hard she will give herself hives, then try to make herself throw up. These are often pretty easy to handle when we are at home, but when we are in the car, it is particularly challenging. Anyway, this one section of highway that I travel on ALL THE TIME is now under construction and I was going along like I always have, constantly checking back on Ginger when I was pulled over. I was going 60 in a 35 according to the cop. Luckily he gave me a huge break and ticketed me for 55 in a 35 and didn't double it (which he totally could have done) but I was just mortified. Of course when I tried to explain that I was looking back at my kid who was crying instead of noticing the speed limit signs, I look like a huge ass because of course, she had stopped crying as soon as the cop pulled me over. He took my license and registration and went back to his car - I looked back at Ginger with a look like 'are you happy now' and she belts out "Happy New Year Mom!". Oy. This child, this child of mine.

We feel so judged don't we??? Like, I wanted to call him after the fact and explain to him that I always follow the speed limit, this was just a weird time because of Ginger and her seizures and blah blah blah - so funny. I didn't cry though - I almost did - but didn't - guess I'm growing up. :-)

THEN - yes, it gets better - then I wake up Ginger that afternoon to put her in the car to go pick up Madeline from school - and I have a flat tire. Who? Who the hell gets a speeding ticket AND a flat tire on the same day???? ME! I didn't really think I was rushing - I really had thought that I had let that go - that rushing, urgent, nonsensical way about me - like everything I had to get done that was was just so frickin important - please. I really thought I had let go of that - cancer showed me just how frickin stupid that frame of mine was - this was obviously trying to point something out to me. I'm not even quite sure I have figured it out yet to be honest. It humbled me - I'll give it that - I'm certainly not going to be giving my hubby any more shit for his driving style. And it reminded me that it's not always about me - a mind trap I am constantly getting caught in again. It's weird, like, I'll explain this with something simple - picture me, holding a sleeping Ginger who weighs 37lbs, walking into a tire place to get some help for a flat tire - and no one opens a door, sees what I need, offers to help - nothing. I get infuriated by this. Now, I ended up leaving that place and praying I would get to the next tire place down the street on my leaking tire - which I did - had a lovely experience and the guy, who had never seen me ever, repaired my tire for free. I looked at him and said ' you just earned a customer for life - thank you so much'. (Big O Tires in Prescott Valley - they ROCK!) I guess the point I'm trying to make is I'm starting to relapse into this frame of mind I had before cancer where I just expect everyone to notice others in need - and they don't, and it's frustrating. But ya know what? - some do - like Big O Tires - and I need to remember to allow the ones that do - to be the stories I tell, and not the ones who don't. They may be fewer, but they are much more powerful.

So - Ginger has her MRI on Friday at PCH and I'm nervous but ready to get some answers. I have completely changed the way she eats since her last seizure and maybe it's just wishful thinking, but I feel like she is a completely different kid. I'm much for hopeful than I was when I initially scheduled this test. Ready to move forward with this.

PJ and I had date night last night and went and say True Grit which, I thought was awesome. Now, I hadn't seen the original, so I don't think my opinion really counts, but I really liked it. I recommend it simply to see the actress who plays the young girl - she is amazing. Needless to say, I am so sleepy tonight, I need to hit the hay. Starting a new exercise class tomorrow morning too, so want to get ready. I really want to lose this weight this year - doesn't look like my exercise schedule will be continually interrupted by frickin surgeries - so things are looking good already. Luvin my boobies by the way - I'll post some pics here soon before the tattooing - want this icky part to heal a little better first.

God Bless