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I have breast cancer and am a snappy dancer

Monday, February 21, 2011

Stop The World I Want To Get Off

So my last post was lengthy, and was quite awhile ago. I got my head screwed on straight after that last CTCA appt - and have been actually in a really good place mentally and spiritually about my treatment and such. I noticed that my medical staff wasn't 'freaked out' like I was, and we ended up chatting for quite some time about me, my treatment and what they felt would work. It made me realize that if they aren't freaking out, why should I be? But then almost immediately I realized - wait - why are you looking to THEM as your gage, you should be looking UP for that comfort, and that is available always, if I just look up. Drats. I keep forgetting to let Him - dang it. Trust. Trust. Trust.


So then my mom goes into the hospital this last week with a blood clot in her leg. She was in for 2 days and released late this past Thurs. I find this constant struggle of feeling the need to be by her side at all times, and be the mom and wife to my own family. I know we only live 80+ miles away, but this past week it has felt like an eternity away. Blessedly I have been able to help coordinate friends and family to assist with her care, but I wish it could be me all the time. I was able to spend all day Wed with her - and I sat there, watching her while she dozed on and off, I could feel her inner struggle. I sat there and could feel it as if it were my own - and I wanted so desperately to take it away from her. She is so frail, so weak - I can see in her eyes the doubt if she has the strength to do what is necessary to get better. I know this look - but I know this from a completely different perspective, and a perspective from about 32 years younger. My mom was always the one who held everyone together - the one who stepped in to raise her first special needs granddaughter when no one else would step up to the plate - the one who grabbed hold of the word 'independence' when she suddenly found herself divorced in the early 80's and ran a marathon with it - she was key in how I perceived myself as a woman, and independent, self-sufficient woman. She's tired - and I can't really blame her. I don't know how to be there for her - maybe I need to just ask her. She is getting a second opinion with another oncologist which is a blessing - the idiot doc she had paid no attention to her complaints that her leg was hurting when she was in - perhaps if he had just looked at her leg, she wouldn't have been in such dire straights this past week. Jerk.

So we are there in Phx with her on Sat along with my aunt and cousin who came in from CA to help (thank you Jesus) and Ginger has another seizure. This one was different, and she actually stopped breathing and started turning blue, so we called 911 this time. Is this supposed to be a sign that I'm not paying enough attention to my family? Because if it is - please lay off my kid!! This seizure was more drawn out - she is more developed now so she is now somewhat aware of what is going on and trying to communicate that to me - it was so frickin scary. I am holding her, she is throwing up, but in a 'passed out' kind of state - it's kind of flowing out of her mouth and nose - not projectory - then I hear PJ's voice say 'dina, she's turning blue you've got to get her to start breathing' and I did what you are sooooo not supposed to do - I turned her around and kind of sat her on my lap with my arm around her mid section and stuck my finger down her throat - I thought maybe she had vomit in her throat. I felt her react to this and I think this kind of shocked her into breathing again, because the color quickly came back to her face, but then she clamped down on the tip of my finger - seizing - and would not let up. I can't even explain this pain, but I totally get why we as women are so much better at tolerating this. I was sitting there thinking 'wow - this REALLY hurts - but she's breathing and I'll get my finger out of here eventually' and the pain just went away. We tried to pry her jaw open and that wasn't working, then I just spoke to her in a calm voice ' Gingy hun, let go of mommy's finger please, open your mouth' and she let up a bit. Then I just held her and the fire dept got there. She started coming around and was responding, slowly, but responding. They checked her temp, her blood sugar, her blood pressure, everything - normal. Nothing out of the ordinary. So frickin frustrating. When this one started we were on the floor in the bedroom getting ready to play a board game - she sat down on her knees to join the game then sat up and put her hand to her throat and looked at me. I thought she swallowed a game piece at first, asking her what was wrong and patting her on the back - then I watched her expression change to that of the familiar, seizure type of face. Where she just checks out - although this time she slowly transitioned to this, it wasn't as fast as it has been.

We didn't go to the hospital. We knew what would happen as we've done that before. They would have put her through a barrage of tests again only to tell us they found nothing and we just couldn't put any of us through all of that again. We just wanted to go home. So as we traveled up the hill back to Dewey that night, I sat in the back of the van holding her all the way home. The moon was full and bright - I could see it through the back window and the winter storm was at a calm point as we drove home. I held her - and just cried in the backseat - looking up to the sky cursing this God I love so much. Enough already - seriously. And if one more person tells me that 'God won't give you anymore than you can handle' I think I'll just kick them in the crotch. I am at a loss as to where my emotions are to be directed - I feel like I'm being pulled in a million different directions - like I don't know where I'm supposed to be focusing my attention. Like I need to be in 3 different places at once - and I just can't. And all 3 places are really important. Oh yea, and I'm dealing with these new chemo pills and I'm not feeling really great. Maybe it's because of everything else going on, maybe it's because I'm fighting this head and chest thing my family had for a week - maybe maybe maybe. I just feel like crying. I want to fix everything, and I can't. I just can't. I want my mom to be better. I want to figure out what is wrong with my Ginger. I want these pills I'm taking to kill the cancer inside of me. I want I want I want. I know that the Word says we will receive what we ask for if we just ask - however, we get things in His time - not ours. Perhaps I can find some comfort in that. But I need to keep moving forward. I can't tell you how much I just want to crawl into bed, pull the sheets over my head and sleep - for days. Actually, some people do this - I know, I cannot.

I was supposed to be in Phx today again to check on my mom and get a meal list to her to follow and take Madeline to a pediatric urologist to review her tests she had done a couple months ago - but today I woke up feeling sick. Great. So we all stay home today, and I head down to Phx tomorrow for my tattooing. Then Phx again on Fri for my CTCA appt - just labs and my calcium infusion. I can't believe how much I am driving. Gas prices are killing us - I'm adding to my list of prayers the price of gas to go down. Oy.

I hate to be all BLAH in this post - I am usually able to write myself into a better state of mind, but I'm finding this challenging today.

My hubby and I celebrated 6 years last weekend - the 12th. It was so cool - Madeline asked me if she could see pictures of us getting married and so I pulled out the pics and the video which PJ and I had never watched (shame on us) and after dinner we all gathered on mom and dads bed w/ popcorn in hand and watched our wedding video. It was pretty cool. For those who don't know, PJ and I got married in Vegas - at the Hilton on the Star Trek Experience ride. Yes, we were married on the USS Enterprise. It was pretty frickin cool. We hired someone dressed as a Borg and a Klingon as our witnesses and made anyone who came wear Spock ears. Hilarious. It was pretty cool to relive that I must say. I wonder how long it will take Madeline to realize I was 8 weeks pregnant with her when we got married. We kinda decided to have a baby together before we decided to get married. Oops.

I'll try to be more diligent about posting - I need this so much. It helps unclutter my brain. Plus this tattooing will be an interesting experience. I wonder if they have a book of areolas for me to thumb through to pick out - like 'areola mug shots' kind of thing. Maybe I should have them start shaped - that would be kinda cool - hmmmm. Can't wait to see the look on her face when I ask for this - I love it.

God Bless -

Wednesday, February 9, 2011

We'll Figure It Out

I have been cooped up with the girls with the coughing crap all last week, then PJ got it at the tail end of the week through the weekend - now, I can feel myself fighting it too. I was making up the bed in the spare bedroom one morning last week when the words above just came into my head, seemingly out of nowhere. I said it out loud to myself "we'll figure it out" and suddenly a sense of peace came over me. Don't get me wrong, I know how this looks - it looks bad. And if I forget that it looks bad? All I have to do is be around someone close to me and I am reminded - simply by the looks on their faces - like people are losing hope. I'm not being a bitch here, seriously, but I think this has gotten to a point where people have run out of things to say - or they are afraid to say anything hopeful because it has been such a shitty road thus far. I don't blame them - I would probably be the same way. However, I - ironically enough - am full of hope. Not all the time, I am human, but most of the time, I really am. I look at what I have going for me - I feel fantastic, a normal liver function test, healing bones, no recurrence anywhere else - it's just this pesky liver tumor we gotta figure out how to manage. I have had many conversations with myself and the man upstairs and know, that ultimately, He and I are in this together, and it doesn't really matter what others think, say, look like when then see me, etc. Do I want someone to tell me everything is going to be fine? You bet your ass I do! Every frickin day! So I tell myself this, everyday. I wake up in the morning, sore - from Erin's class at the Y - thank you - but ready to face the day with my beautiful children and make this life the best I can. I am constantly reassuring myself - which, oddly enough ends up me reassuring other people too. Funny.

However, when I start feeling that fear - I try to just say to myself, 'turn this fear into faith Dina - do it!' and it does work. It really takes some effort, but it is working. I need to stop myself from getting all pissed and sad and upset and jealous of others who don't have to go through this - I have been doing this a lot lately and I need to just stop. It doesn't change anything, except my mood from pretty OK to pretty depressed - and what fun is that? When this happens, I try to remember to remind myself that this is what I have - like it or not - this is what I have - I get to choose how I react to it. Do I stay all pissed and sad and angry about it? Cuz that's easy - I can do that all day long, probably while I'm sleeping. I keep trying to turn this around on hope. Hope. Trust. Hope. I'm not afraid to say it's going to be alright. I say it to myself all the time.

So I'm feeling all this crap up there in that paragraph above, and my mind just races like this all the time because, well, I spend a LOT of time in the car. Anyway, I get here to CTCA today for my bone scan and to meet w/ my onc and I am in the waiting room, and I pull up my email on my phone (this is where PJ gets pissed cuz I'm not supposed to use this data function on our plan) and here's the devotion for today. OK - I have to just post it here, sorry for the long read:

… and she lives happily ever after.
9 Feb 2011
Glynnis Whitwer
"... your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."Psalm 139:1(NIV)

I recently finished a bestselling novel. It was over 1,000pages, epic in size and story, and consumed me for weeks. A respected acquaintance recommended it, and once committed, I stuck with it to the end ... in spite of wanting to quit, often.

By the end of the first chapter, I realized it wasn't going to be an easy read. The story was set in the middle ages, with uncomfortably real sections. Perhaps I'm a bit sheltered, but it seemed to contain unnecessarily graphic descriptions. Skimming over the uncomfortable spots, I kept reading.
The book ended well, but there were times when I was ready to close the cover, and move on to something happier. The antagonists were just too mean. The plot too painful. The abuse, greed and vindictiveness too ugly to dwell on.
If that book ended badly, I would have been disgruntled at spending weeks of my life on it. On the other hand, I would have been frustrated to quit before finishing. Here's why.


If I had quit reading at page 245,the story would have seemed hopeless. I might have thought the villains won, or the hero and heroine never reconnected. If I had read a bit further, to say page 576, the story would have ended with justice as an impossible dream, and hatred and revenge as unavoidable and all-consuming parts of life.But now,after reading the book in its entirety, I can see the amazing story. The plot progressed steadily; there was tension, conflict and eventually resolution. Good did triumph, although not without many bumps along the way.

It got me thinking that our lives are a bit like that. For those of us who have accepted Christ, we will have a happy ending in heaven with God. One way or another, our story will end well. But not every page or chapter in our story is happy.

Today might be page 452 for me. And on page 452 there is conflict and tension. Last year might have been chapter nine. And in chapter nine, the protagonists struggle financially, and wonder why God allowed such pain into their lives. If I only read one page or chapter, I would have a very different view of the story.

Yet the Author of my story has a purpose for every page and chapter in my life. He’s got a story in mind and is building and developing the plot every day. No story is conflict-free. No story is complete without a challenge. Victory is empty without a struggle.

Today, I’m considering my life as a grand story. Good will triumph. The victory will be sweeter because of the struggle. Today is not the story. It’s just page 452. So I will press on, trusting in a loving and creative Author to bring about resolution. You see, I already know the ending – she lives happily ever after.

Dear Lord, I praise You for Your creative and all-powerful nature. In light of the difficulties I'm facing today, I choose to trust You, believing You are writing an epic story in my life. Help me to press on when I want to give up. In Jesus' Name, Amen.

It's quite a trust issue to just know that you already live 'happily ever after'. But it also reinforces the fact that we have one shot on this earth - one. That's it. The most perfect part of this prayer for me is 'in light of the difficulties I'm facing today, I choose to trust You'. That is HUGE! I will press on, and I won't give up. Not by a long shot. This is a time in this disease where I feel two completely opposite things at the same time. I feel the most alone I have ever felt, yet the most loved by the Lord. Quite a dichotomy.

I was getting my blood drawn just a bit ago, and here comes another thought seemingly out of nowhere. The thought was 'they are here to help you'. Now as stupid as this sounds, I really think I needed to hear this because I think I have subconsciously thought that these people with their normal cancer free lives where the bad guys - they were the ones always delivering the bad news, right? I need to remember that they have dedicated their lives to helping others. I think, once again subconsciously, that I still hang onto that 'in charge' person and that I'm supposed to be the one to take care of others and these people really are just here because it's their job not because they actually want to HELP me - I am wrong. So - I will open my eyes again at these people, and choose to have them viewed with hope filled eyes. I wasn't even aware I was doing this, but I think I was. Bringing this negativity into these appointments. Not on a huge level, I always am making everyone laugh around here, but on a deeper level, inside of me.

I'm going to go get something to munch on before my appt in an hour or so. I have a list of questions to ask the onc and the naturopath and the dietician. We'll figure it out.

God Bless

Tuesday, February 1, 2011

At Least I'm Earning my Disability

Well, I was feeling kinda guilty for receiving my disability payments recently cause I was feeling so good - at least this scan has wiped that guilt away. Unfortunately, I've been having those stupid, annoying dark thoughts - which I now realize I do this every time this journey takes these types of turns. Thoughts of dying, of not being around to raise my children, to thinking of my husband meeting and loving another woman, and that woman raising my kids and them calling her mommy, of my husband making love to her - this is some f()*cked up shit - right? Shit - I can't even type this without crying about it. This is probably the most painful, heart wrenching part of this journey, is how my mind goes to these places - and I just cry - cry so hard, so deeply, so A F R A I D. I tell these things to my husband, which is probably really unfair - I mean, I'm expecting him to say 'Dina - that's not going to happen' or 'Dina, I could never love another woman' or 'Dina - you are the only mommy these children will ever know'. These are the things I WANT him to say - but he doesn't. He just looks at me, tells me that everything is going to be fine while trying to digest all of this himself. I expect him to be there as this rock, this solid rock of positivity, of reassurance, of constant comfort - and I forget that he is going through this too. Then I worry that he doesn't have anyone he can go to with this - no one he can go to to talk about his fears, his anger, his frustration. It isn't me anymore - I don't know who he is talking to, and it breaks my heart. I am then reminded of where I really can find all of this - and it brings to mind the ironic 'word' I chose for this year to work on and incorporate into my life - TRUST. Frickin ironic, eh? Well, this word could not be more appropriate for what I am facing now.

Then I read a story in the paper of a 28 year old mother who was also 6 months pregnant with their 2nd child who suffered a brain aneurysm and both died and I think - wow. We really just don't know, do we? None of us know - and it's tragic at times, ironic at others, miraculous at others - we just all have these individual journeys and we just don't know what they hold in store for us. I'm trying really hard to just operate in 'feel' mode, and I am feeling so great. It's like this inner battle is ongoing with my thoughts trying to 'take me down' so to speak. My heart versus my brain. I heard recently that it's a hell of a lot longer than just 18 inches between your head and your heart - ain't that the frickin truth, right? In any case, the past few days have felt like an inner battle between the two.

So I had forgotten the insurance dance that needs to take place in obtaining the Xeloda pills. I did remember the $5k cap on name brand drugs on our policy which is why we had to apply to the drug mfg for financial assistance last time (they don't make a generic of course) but I forgot about the $500 deductible. So now I've added winning the Publishers Clearing House Sweepstakes to my list of nightly prayers. Hey - someone has to win, right??? In any case, we're making our way through that red tape right now so we can get started on it as quickly as possible. I started the arimidex (which does have a generic thank you GOD) on Sat and that is fine so far. I don't remember when the side effects of the Femara started happening way back when, but I'm trying to just keep moving forward and not think about it. I go back to CTCA on Friday for a bone scan which is standard when starting an aromatase inhibitor and a meeting w/ my oncologist. I'll be asking some questions - like, how do we know this is even breast cancer on my liver - should we investigate liver cancer chemos - why isn't surgery something we are talking about - why can't we do theresphere again with a higher dose - those kinds of things. I want to make sure I'm focusing all my attention on what the current plan is, and sometimes I think my me thinking of all these other things I'm already assuming this current plan won't work - but then again I realize, there goes my brain again, I have to tune in more to my gut - and my gut says that I'm fine. I just need this stupid scan to catch up with how I feel.

Amidst all of this I have been taking an Arizona Defensive Driving Course in order to negate the speeding ticket I received - what a dichotomy that has been, seriously. So awesome you can take them online now, and log in and out when I had an extra 30 minutes or so. It has been an awesome diversion, so well timed for my first speeding ticket - ever. And thankfully, it won't appear on my record - cuz that is REALLY IMPORTANT isn't it? In the big scheme of things? If you're wondering like I did how they know it's you and that you're even paying attention through the course, the one I took threw in these random statements in the middle of the course section. Like I'm reading about lane changing and all of a sudden it says 'Corporal Klinger in the hit series MASH wore a size 10 dress shoe.' Then they would test you on this at the end - it was hilarious. So that, ironically again, was a blessing.

The message this last Sunday was about Fear - again the irony - and we recited Psalm 23 - which I couldn't get through without crying. But to be completely honest, the softest place I can fall is in the arms of my Lord and Savior. He is the only one who knows, in the deepest part of my soul, where I am and what I need. He is the only place I feel safe - the only true place I feel peace, and comfort, and assurance of hope and my future. If I just take the moment it takes to tune into it, especially when I am feeling the battle of my mind, then I find peace - but doing that continues to take practice, and discipline, and trust.

I sat in a steamed bathroom last night with Ginger who woke up around 12:30am with this horrible croupy cough. Then laid her next to me as she struggled to breathe through her coughing and was awake till 3am. This is where I'm meant to be, this is who I was created to be, this is what the Lord has intended for me to be. Right here - right now - in this family, mother of these children, wife to this man. No one can ever take that away.

God Bless -