All Bound Up

Woke up this morning feeling pain, which was a bummer. I think that the drugs actually wore off from the surgery finally and my medication wore off at the same time. I really thought I was getting off easy this time, no such luck.

Mom and Britt came up this morning and have been such a help. My girls are really addicted to me as of late, which makes it extra hard to be so incapacitated. It's also hard on those who are helping me, because my kids don't want anyone but me - so they cry and run away from everyone else. I forget sometimes they are going through this too on their own level. It's equally as frustrating, scary, weird and out of their normal routine for them. They are so sweet though. It's funny, at the point I'm feeling most helpless, they need me. Giving me such purpose, and love, and appreciation. This is not by accident. So awesome. Madeline turned to me this evening when we were getting ready to brush her teeth and said to me " Mom, you're the best mom is the whole world." Talk about purpose. I am so very blessed.

I decided to get Ginger dressed after bath tonight and she totally kicked me right in the chest. I can't even tell you how this felt - it was surreal. It was almost like it didn't register in my mind what happened until moments afterwards. Very strange. Needless to say, this was not a smart move on my part - won't be doing that again. I guess I just get stressed sometimes when I can't keep my kids schedule in line. I never should have gotten down there and bathed them, but I did. PJ had ran to the store and it was taking longer than usual, so I just decided to do this myself. My kids are so used to their structure, I freak a little when I don't stick to it, especially when everything else is so, well, unstructured with us right now. This surgery really came out of nowhere. When my dr told me that we needed to have this surgery, I immediately started crying in his office. (which he had no reaction to by the way, story for another time I suppose) And in retrospect, my tears were because I knew this would screw up the routine, the simple stupid routine we take for granted every day that holds us together like glue. And I know, it sounds really stupid, but I feel bad. Like I need to apologize for screwing it all up for everyone. I don't know if that is a woman thing, to take the blame like this, or if it's a Dina thing - but it's a real thing to me. People can say "it's not your fault" and I hear this, but it doesn't take away my feeling of guilt. That is just there and I continue to work though it.

So here's the cool part, I get to spend New Years Eve with my husband, my kids, my mom & my niece. I get to reflect on this year, this year - wow - full of so many things, and I get to be surrounded by my family. How very blessed am I. This year has been a whirlwind. I am not the person I was a year ago. I know years change many people, but this year has changed me into an entirely different person. It took who I was, and lifted me up like 10 notches. In rising up those notches, pieces dropped off, shed away, other pieces were magnified, got brighter, and new pieces emerged. But also, growth occurred. Growth in my relationship with God, my marriage, my friendships, and myself. I have a completely different definition of who Dina is - I thought I knew before, but have such a deeper understanding now. What an awesome experience of self awareness. I wish everyone could get this for themselves, without having to go through what I have. But maybe that is the payoff - such a shitty thing, for this beauty to emerge. Hmmm. Who knows.

Happy New Year to all. I probably won't post again till Sunday evening, so have a safe and happy new year.

God Bless -

and Dina Drains..............

So, surgery went well. Late, I didn't get in for prep until 4pm, and my surgery was originally scheduled for 3:30. So we didn't get back home here until 9pm. It was a long day. It was so hard waiting, and I have to say, it was the wrong choice for me to wait for this surgery. Yes, I'm glad we went on Polar Express, but it was pretty miserable knowing that the infection was just getting worse. Back to the waiting part yesterday, I have a sneaky suspicion why everything was backed up. I was livid, in pain, angry, hungry, thirsty (couldn't eat or drink anything since 7am yesterday) - I was in a totally wrong frame of mind entering into this surgery. I'm not saying I've been doing cartwheels into the other surgeries I've had this past year, but I at least had a good attitude and my sarcasm at a high point. Once I realized that I was clearly NOT in that frame of mind, I prayed about it. Then I had to pee really bad, so I asked if I could go and they ended up taking me back to get prepped for surgery. Coincidence? Hmmmm.

So here I sit, my chest wrapped up like a burrito and these drains hanging out of me once again. Couple good things - feel SO much better since all the infection is now gone, and I can move around a lot better this time than I could after the initial surgery. Maybe cuz I've already had my muscles adjusted, not sure. I asked one of the nurses in the OR if they ever let out an "EW!!!!" when they open up infected people like me - he laughed and said "EW! Gross!" I said that I was actually pre-maturely embarrassed for what they were going to find there during surgery. So I apologized to him early. I'm so weird. I guess there was a lot of infection (DUH!) and I just got a call this evening from my doc office saying the culture came back and one of the antibiotics they have me on was ineffective with this type of bacteria. Great, that's what I've been taking all along - and now know it wasn't working. Needless to say, I'm still pretty frustrated with this whole situation. Am I in pain? Not too much, but I've kept on a pretty good percocet schedule since yesterday. Also, I can't take a shower again for a week and no lifting again for six weeks. I'd scream, but I remember I'm not very good at it. I'm going to be healing for the next 3 months, so I've got time to figure out what to do. I'm contemplating finding another doctor, but not until I have a real heart to heart with my current doctor. I think that's only fair.

My mom and Britt are coming back up tomorrow am to help us for a couple days. I'm so very blessed - they just left and here they come up again to help my sorry ass. Also, I have meals coming every night this week. And, there was my mom, Britt, Sean, Joe and PJ's dad waiting for me through my whole surgery yesterday. Nancy was here taking care of my kids all day yesterday and today - it just doesn't stop. I've had so many people show up for me, literally, in so many ways - I don't think I'll ever be able to thank everyone properly. I'm so blessed to have all of them, all of you.

It's going to be weird to take these bandages off next week and have nothing there. I mean, before he was able to fill me up half way, so I had a tiny bit of cleavage. Not this time. I will handle it, I have to. Like everything else, we just plow through it, don't we? Once again, if someone would have told me this time last year 'Oh yea, you're going to have your breast tissue cut out, expanders put in, filled, then infected, them removed, then start all over again in 3 months" I would have said "fuck you". But guess what? You do it. You just do it. I wasn't scared this time, I was angry. So I prayed. I prayed to God to help me change my anger into grace and just trust in Him. Be thankful, be graceful, and trust that He would take care of me. Again, peace.

Must have ice cream now - and my new antibiotic (PJ went to pick this up for me). Did I happen to mention how fabulous my husband is? I need to say that I am the luckiest woman in the world. Talk about showing up for me - I know I've said it before, but I must have done something right in this life to deserve this man. To have him by my side through this, I wouldn't be the woman I am today without him. He makes me want to be a better person. He is my world, my life.

Alright - NOW I must have ice cream, and a pain pill. My chest is aching a bit tonight, right in the center sternum area. Probably the burrito wrap. More cheese please!!!

God Bless -

Where Have I Been All My Life

If you haven't heard the above song on the new George Strait cd, you must. It is awesome.

So, finally - surgery tomorrow. I thought it would never get here. In retrospect, I'm not sure waiting for this was the best decision. It's been horribly painful, gross and stressful to deal with this through the holiday. I know the alternative would have come with it's own set of stresses, but at least it would have been all done.

I ended up NOT going to church to direct the children's program. Ginger's temp went to 101 that afternoon and I just couldn't leave her. The good news here is, no seizure! We've been managing a fever with her for the last couple days, and thank you Jesus, no seizure. We think maybe she had a mini one when we were at the Polar Express, but we're not sure. So, my good friend Mary Ann took over for me at church, and I stayed home with my infected boobs and my sick girls. They both are doing better (my girls, not my boobs). Not 100%, but better.

I developed some annoying mouth sore on Christmas Eve and it has gotten worse to the point where it hurts to eat. Now this is on my right side, the side where the infection has not drained out yet. It drains on the left side daily, which is so gross I can't even explain. I basically change the dressing and it starts pouring out of this open wound. I lean over the sink and just wait for it to subside. The right side is just all red and black/blue - no open wound on that side so there's no place for it to go. It's swollen and painful to the touch (what I can feel anyway). I don't know where or what this sore is in my mouth - could it be just more infection coming out in different ways? Maybe. I'm just really getting tired of this shit.

I need to stop asking myself 'why is this happening' because I drove myself crazy when I did this with my initial diagnosis. I'm never going to get an answer here, so I need to just keep moving forward. I'm also kinda pissed - how did an infection like this get missed? I see my doc weekly, they've never seen an infection before? It took pus to start pouring out of me to take notice? I even asked, is it supposed to be this red and painful when I get a fill? No one listened to me, and I'm very frustrated. I mean, whether it was caught now or earlier, the solution would have been the same - removing the expanders. I'm just feeling a little concerned about the care I'm getting is all. I don't know shit about this stuff, so I look to them for answers, I look to them as the professionals - what I need to remember, is I am the patient and I have a brain that works logically too. I can't doubt my logic when it comes into play just because I'm not a plastic surgeon, or physician, or oncologist - etc. We all need to speak up for ourselves, no one else is going to. And I don't mean that in a 'you're on your own sucker!' kind of way, I just mean we all need to take some responsibility for our own care, and not just do everything they tell us to do because we think they are the 'expert'. Does that make sense?

So, surgery tomorrow at 3:30. I've got help for my girls tomorrow and Tues, then not real sure what we're doing for Wed. I'm hoping I'm not too bad, but we'll see how I feel.

My friend Jennifer reminded me of something important today. She said that at least I had my PET scan already so I know it's not a cancer thing. I didn't even think about that - yes, I totally would have thought that it was something like that. I need to remember that this is just a bump in the road. I'm recovered, just need to take a quick side step is all. Maybe this all was just too much for my body to try to heal and handle. I was 2 months out from chemo, had mastectomy with reconstruction and had my expanders filled 1/2 way. Maybe my body just couldn't do all the things it was supposed to to heal all of that at the same time. I'm bummed, but I understand. Upward and onward.

Got out my lesbian shirts to wear again for awhile since I can't pull anything over my head for a week. Maybe I'll pick up some Birkenstocks just to confuse even more people at Walgreens. ;-)

God Bless -

Dina - Reconstructed

Well, my fears have come to fruition. I've developed an infection in both of my expanders and they have to come out. I just cried listening to him tell me of the new game plan. Surgery is scheduled for Monday. He will remove the expanders, obviously clean me out of all infection then seq me back up. After about 3 months of healing, which should be faster w/o any expanders in - we'll start over again.

I go back and forth between laughing and crying. I don't want to be laid up again, I was just feeling so good. I'm confused by why this happened. I did everything right - but my doc says this is simply a complication of any surgery. I guess I think I'll feel better if I can blame something. Or someone. I don't know. I so didn't want this to be the scenario - and I'm so upset that it is. Being said, I will do this. Like everything else, I will do this. I'm kinda releived to get these suckers out to be honest, breathe a little sigh of relief if you will. My body just didn't like THESE expanders - my body wants different one. Leave it me to be particular about such things.

So we were able to do Polar Express last night which was so much fun - and cold - woke up to a tamp of 2 this morning. Ginger is now sick. Madeline has this horrendous cough and now Ginger has a fever. What a Christmas at the Mountcastle's eh? Infected boobs, fevers and congested coughing. Wanna come over??? I thought I would have to have surgery right then, or at least today - but he scheduled it for Monday - glad that I didn't miss any of our holiday plans, but this is VERY strange walking around knowing I'm simply controlling an infection. It's quite disgusting and is making me just want this out and over now. I even toyed with the idea if reconstruction was really that important. My doc asked me, 'was it the right decision for you when you made it?' - 'yes' I answered. He said 'Then it's the right decision now. Don't look at this as a complication - this is manageable. We can fix this.'

I'm so tired. And trying to find the humor. It comes and goes to be honest. Not quite at the forefront as it has been in the past.

I'm keeping my kids home this evening while I run and direct the children's program at church. I don't want my kids around anyone else right now. Time for quiet and warmth for them. Me too, eventually. I can't believe I'm having surgery again before the new year. This is surgery #5. I'm tired.

Merry Christmas to everyone. I know how much I have to be grateful for. I'm cancer free and that is indeed a miracle. This other stuff is just annoying stuff I'm going to have to deal with. Good, bad or indifferent. It's what's happening and I just gotta plow through it and find the humor. I'm already calling this the Christmas of the Infected Boob. We will always be able to look back and say "Yea! You were cancer free that year! Oh - and our boobs were all infected too, right? Ew Dina - seriously."

God Bless - and I'll have PJ post on Mon to talk about the surgery. It's outpatient so hopefully will be - well - unremarkable. ;-)

Honey! I've sprung a leak!!!

So this has turned into one of the most horrifying and frustrating days yet. Get this, and I'm not making this shit up - believe me:

Up at 5am so we can be on the road by 6:30 as I have a dr appt at 8:30 and for some reason I thought it would be a good idea to bring the entire family. We pile my poor sleeping children in the car and Madeline proceeds to cough the entire ride to Phx. In fact, she coughs so much she gags, then yes, vomits all over herself in the back seat. We pull over, clean her up, and off we go again. Not 10 minutes later, we hear it again, only now it's Ginger - she has spit up all over herself. (she is way too young yet for the whole 'don't throw up or I'll throw up' thing right?)

So I decide to drop PJ and the girls at my moms and go to my dr appt on my own. I'm ready to discuss this horrible pain I've been having, and the odd redness on the outer sides of both of my breasts. I get there and the doc walks in - he doesn't know why I'm all red, but puts me on 2 different antibiotics. Then you think it's infected? I ask - No - he says. OK. I'm confused. And no one addresses me being in pain. I am so frustrated I can't even believe it. At this point, I just want to get out of there. He says he wants to see me next week - appt scheduled - out I go. I go to get in my car and someone with this crappy piece of shit Yukon has parked so close to me, I can't get into my car. I tried too - no go. I was now livid. I walked back into the dr office and announced 'who is the one with the black Yukon? I can't get into my car!' Of course no one fessed up - so out I go again, and I realize I'm going to have to crawl across the passenger side to the drivers side. This is normally not a big deal, but try doing this with an open wound healing on my left side and the 'it's not infected but it's red' pain I have been having for over a week now. So painful I can't even explain. I did leave a not though - why do people do this? Do they have no consideration at all for other people? Ever? So, I screamed - I consciously thought about this before I did it - really wanting it to bring me some sort of relief, I really just felt stupid. It didn't really help, and I didn't think my scream was a very good one. Well, at least I tried.

Off then to Scottsdale I go to get some new mastectomy bras - THAT actually was a pretty good visit and I left wearing one. I felt like a new woman.

Flash forward now to us all being back home here in Dewey, my mom and Britt have come up for Christmas and we are preparing for the Polar Express tomorrow, when I realize I needed to run to the store and the pharmacy for my new antibiotics. This would normally take like an hour or so to run into town. Cue snow storm. I don't get home for like, 3 hours. I'm home and I'm exhausted, plus I haven't eaten anything but a donut all day. I sit down for a minute, and feel this wetness under my shirt - like when you've been working out while wearing a sports bra and you sweat between your breast? It was strange - so I go to my bedroom to check it out, and there is this liquid saturating my new bra - (this is gross, warning!). I thought at first my wicked cool silicone inserts had busted or something. No. It was fluid - lots of it - draining out of my open wound. This had gone through the bandage already on there, and was literally pouring out of my chest. It was repulsive, and everywhere. I called PJ in and we both just kinda freaked for a minute - then quickly got my dr on the phone. What they think happened, was there was a pocket of fluid that needed to drain, and perhaps the pressure of the new bra caused it to flow out so rapidly. Let me just tell you this was so frightening. To have this shit coming out of you, not able to control it, and not able to feel it - very strange and surreal.

Since I didn't have a fever, and the stuff coming out wasn't smelly or anything (like pus or infection - sorry, but it is gross) I was OK but my doc wants to see me tomorrow morning. If I'm fine, great, but what is he going to see tomorrow that he didn't see today? He said there wasn't any fluid this morning, then look what happened? I'm just frustrated. I've been feeling like no one has been listening to me when I've described what's wrong with me. I didn't even know what happened today COULD happen - shouldn't there be a pamphlet or something? I know we don't always have the answers - I just want a few is all.

So here goes my husband, yet again, kicking into high gear to handle the kids, dinner, everything. I'm bound to the chair and shouldn't really lift anything.

So tonight I pray for healing. And I pray for all to go well so we can head up to Williams tomorrow afternoon for the Polar Express. Maybe we just weren't meant to go - not sure. Would've appreciated knowing that before I paid for it back in Aug.

Needless to say, this has been an emotional day. I am once again falling asleep whilst I type here, so I need to end on this note.

Ginger kept handing me my devotional yesterday. She handed it to me 3 different times, when I would take it, say thank you and put it on my desk. She'd hand it to me again and I'd say 'thank you' and put it on my desk. She did it a third time and this was rare for her - she rarely hands me a book that she hasn't tried to tear apart first. (love this stage, arg.)

So duh, this finally occurs to me and I go and read the devotional for that day, with PJ. Here's what it said.

My Plan for your life is unfolding before you. Sometimes the road you are traveling seems blocked, or it opens up so painfully slowly that you must hold yourself back. Then, when time is right, the way before you suddenly clears - through no effort of your own. What you have longed for and worked for I present to you freely; as pure gift. You feel awed by the ease with which I operate in the world, and you glimpse My power and My glory.

Do not fear your weakness, for it is the stage on which My power and glory perform most brilliantly. As you persevere along the path I have prepared for you, depending on My strength to sustain you, expect to see miracles - and you will. Miracles are not always visible to the naked eye, but those who live by faith can see them clearly. Living by faith, rather than sight, enables you to see My Glory.

I needed to read this again today, many times. That Ginger, she knows what she's doing. Must sleep.

God Bless -

Another Frickin "A-Ha!" Moment - jeeesh.

So, my little Madeline has caught a cold. This totally sucks for her cuz it was the last weekend before Christmas as we didn't get to do all the fun things I wanted to do. (not that I told her we weren't doing them, that would be mean) She'd have a temp, then it would go away, have it again, go away, cough, runny nose, the works. I'm going to take her to the pediatrician tomorrow just to check her out. If antibiotics will work, I'd like to start them now so she'll hopefully be OK for Polar Express on Wed then of course Christmas. I'm praying for that. For right now, she sleeps deeply, which is soooooo good.

This weekend was very different for me. On one hand, it was wicked cool. PJ took part in the sermon for all 3 services at our church, which was just so cool. My senior pastor had asked if I would collaborate with her on her sermon for this weekend which was about taking risks and she wanted to incorporate something with Mary and Joseph. (be careful telling people if you have a theater backround unless your willing to utilize those skills everywhere!) So I went searching for Mary/Joseph monologues and really didn't find anything worth while. Most were kinda cheesy to be honest. Found one though, but it was only a Joseph monologue. I thought it was good enough to share w/ her anyways, and she felt the same. She ended up using it in her sermon this weekend, and she designed it as if Joseph was coming to give his testimony. And, you guessed it, PJ played Joseph. He was just great. I think it went over really well. I hope so. I'm just the very proud wife!

On the other hand however, the fill I received on Thurs has pushed me back into a level of pain that I cannot quite describe. Let's put it this way, my chest (can I say breasts even though there's technically no breast tissue to call them such?) is now red with black and blue marks covering a majority of each side. This fill of 100 cc's each side has bruised me. Remember how excited I was to be able to pick up Ginger and hold her, carry her around, put her in her crib? Yea, no more. Can't do that now. Advil doesn't seem to work - it takes the edge off, but we're back to percocet at night so I can sleep. I plowed through this this weekend, trying to act like I was fine, but not fine, went to church and held the rehearsal for the children's christmas eve program (did I mention I voluteered for that as well?) and by the end of the evening tonight - I was in tears. Literally. I went to take the stupid shower I have to take every night so I can change these disgusting bandages and pack and repack this open wound - looked at myself with these bruises all over me and just lost it. I stood in the shower crying - which by the way, is a really great place to cry, the warm water just seems to wash away everything. It made me cry harder I think.

I know, please, don't start with the whole 'it won't be like this for long' crap - or 'at least you're alive' crap. I know these things - I live those things everyday, and trust me, I tell myself that everyday too. I guess I just thought the horrific pain part was over - or at least manageable. To start to feel like a human being again then get hit over the head like this was just too much. I sat just a moment ago to gather my thoughts, sitting on my couch in the light of the christmas lights on our patio, hearing PJ and my girls sleeping soundly - and just started talking to Jesus. Of course thanking Him for all he has and continues to bless me and my family with - then talking through this pain. I asked Him, is this supposed to teach me something? And then the words came right into my head, almost immediately. Slow Down. Simple as that. I need to slow the fuck down - or I'm going to get caught up in all the BS that I used to get caught up in. I need to slow down, remember who I am, what I'm doing and WHY I'm doing it, and enjoy. I need to continue to heal, nuture my poor body back to health. I was beat up on the inside and out for 7 months, that is going to take time to heal. I better slow down or I'm going to miss it. We all are. So as I dry my eyes this evening, I can pop a percocet with a bit more ease knowing that this too shall pass, and just slow down.
;-) Lesson learned. Oh, and probably not going to go for the 100 cc again. 50 at a time may be a bit more my speed.

Have a great week everyone - and I've attached the link to the monologue PJ gave in church if anyone is interested in reading it. I think it's pretty funny. (of course.)

God Bless -

www.biblicalrecorder.org/content/resources/2004/12_3_2004/re031204try.shtml

Thank You Sir May I Have Another?

So, I wasn't going to blog tonight because I just got home about an hour ago from going all day. Tired. But I must share this experience with you real fast, freaky and awesome all at the same time.

I ended up driving to Phx this afternoon to seen Dr. Mo because I wanted to make sure what I was feeling the past couple days was not infection. That, would be bad. This was the first dr appt I've gone to on my own. PJ and Madeline were ringing the Salvation Army bell in front of Walmart today in town. How frickin sweet is that. Anyways, as it turns out, my doc, who is awesome, says it is NOT infected (thank you God) but since the irritaion on the left side is where there is a, well, like 'kink' in my expander he was going to go ahead and have Veronica (also frickin awesome individual) give me my first fill. Wha? He also told me that I should not be on the prednisone as that prevents healing. Didn't know that. Sorry. Oops.

So wow, here I am getting my first fill - he ordered 100 cc's in each side. The normal is 50. Veronica comes in with this tiny 'stud finder' if you will - she passes it across the top corner of my breast to find where the 'port' of the expander is. Once she finds it, she gets this ginormous syringe - I mean, like Tom & Jerry cartoon syringe - this is when I decide to turn my head. She is constantly talking here, and I barely feel the needle penetrate the skin, then I feel pressure. She slowly pushes the fluid into my expander. Each syringe only holds 50 cc's - so she has to do this twice on each side. My chest feels heavy, and no lie, I'm like a whole cup size bigger. It is CRAZY! This took all of about 15 minutes tops. I bled a little bit, but no bandaid needed, nothing. Shot it in and then I was done. Now, I have to say, my chest muscles hurt before, they REALLY are sore now. Wow. So thank you Dr Mo - I got my percocet prescription - ahhhhhh, sleep tonight hopefully.

Thought I would go ahead and post a pic of me, cancer free with my new little do - thank you Sami for being sweet enough to request this. I forget how quickly my looks are changing, it's amazing.

Must sleep now, feeling the effects of the drug and feeling groovy. God Bless all -