Is that your liver or are you just happy to see me?

Well, low and behold I was actually able to have treatment on Friday - Hazzah!!!  My labs were fine on Wed and held till Fri and we are back on track.  I did see a different onc as mine was on vacation, and that was actually a pretty interesting experience.

He asked me lots of questions, and I told him that I had been having some liver pain, as I had mentioned in my previous post.  I told him I could feel it - didn't know if it was inflamed or what.  He sent me for a sonogram to see if there was anything besides the obvious that was wrong.  My chemistries came back 'abnormal' - which to be quite honest, frightened me, since the last time they were 'great'.  There is another level they test, the ones they test on newborn babies against jaundice, and that was completely normal, which is good they say, cuz that would indicate liver failure.  Oh joy.  Just knowing they are looking at that now makes me a bit nervous.  So the sonogram revealed that my liver is just 'enlarged'.  Ok.  Thank you?  The doc said it didn't tell us anything we didn't already know.  Good.  And, how blessed am I that I get the test right then, and get the results from the doc on the phone as I'm in infusion.  Very blessed to not do the waiting game.  Thank you Lord.

Good news is that they are officially switching me to a day 1 day 15 schedule - again, thank you Lord.  No more running to the lab twice a week playing the white blood cell count dance.  Now I have treatment, go down for the Nulasta shot the next day - have a week off, then do it again.  This means 2 Nulasta shots now, which, is good for the white blood cells, bad for the side effects.  The bone pulse pain is so strange, it makes me wanna walk really slow, and carefully, like on egg shells or something.  So weird.  Those started for me last night after returning home from taking Britt to her dance, and has continued throughout the day today.  Taking Aleve - which helps a little.  OH - and they have taken me off anything containing acetaminophen - which means no more percocet, no more vicodin - too rough on my liver.   The doc said that my liver was probably in the shape it's in because of everything that has been done to it - chemo, more chemo, 1 thereasphere, 2 quadrashpere, chemo, pain meds,  now more chemo - seriously, can we give it a break already?  I wish I knew what I could eat, ingest, read, massage, something to give it some relief.  I lay in bed at night, and place my left hand over it - feeling it under my palm, and pray for healing.  I pray for relief of pain, pray for the trust I need in the Lord that He will heal me.  Please, heal me.  Please.

Bone pain wasn't keeping me from church this morning, although it almost did.  I drugged myself with what I could take, which was Aleve and one oxycodone and off we went.  So glad I did.  Got to see my girls in church with their new Bibles I bought them for Easter, and Britt and her sign language group signed Amazing Grace for the traditional service.  Pretty cool.  So proud.  Then, promptly came home and my awesome hubby put me right into bed.  I know I've talked about this bone pain before, these pain 'pulses' if you will, this time they were in my rib cage and my forehead.  I climbed into bed, tuned into some sort of Waltons marathon, cuz I realized I never really remembered what that show was all about, and found it really only provided me with creepy in and out dreams of John Boy.

OH - and here's the best part - I forgot to mention this.  First of all, I have never really bonded with my nutritionist at CTCA.  She and I - well, let's just say our personalities are like oil and water - and anyone that knows me, knows that I'm not real good at hiding it when you annoy me.  And she annoyed me - a lot.  Well., I'm taking this class called Power Thoughts by Joyce Meyers which basically fixes your brain in certain situations - helps you create a more positive life for yourself through God's word instead of being negative, and judgemental, all those little nuggets we never like to admit to.  Well, this weeks power thought was 'I am difficult to offend'.  Do you know how hard this is????  I get offended all the time!!!  Well, I was able to put this into action with my nutritionist - and let me tell you, it totally worked!  Plus, we got to chit chatting and I found out that if I take a teaspoon of honey 15 min before and 15 min after chemo - then 6 hours later - no mouth sores.  I did it and she was totally right - no mouth sores!  In fact, the dry mouth is about 1/2 as bad as well.  What a blessing.  If I had continued my bitch face, I never would have been open to this information from her before - thank you Joyce Meyers!!!!

So I am looking forward to a normal week finally.  My husband gets to work normal hours, I get to enjoy a normalesque week, and I hopefully heal.  I did do something a little crazy.  I entered the Ellen Degeneres 'change my life' portion of her show.  I told my story (in like 1500 words - yikes) and asked for help in cooking and preparing healthy meals for me and my family on a budget.  I just am having the hardest time forming these new habits - or making them stick.  I've made small changes, little by little, but I know I need to do more. It's so hard when I'm so frickin tired all the time.   I just wish I had someone to come in and show me how to do it.  Showed me what to buy and a different way of thinking about food.  I wish I had someone to do it for me - but that is never going to happen.  I do have such an awesome community that cooks for me and my family on my treatment days - and what a blessing that it is - but I am not talking about that.  I'm talking about me and what I am cooking for me and my family to keep them healthy and also help me fight this disease.  Everything is so expensive, there has to be an answer somewhere.  So - say a prayer for me on that front - cuz that would be wicked cool if her producers picked to help me.  Plus, hello??  How cool would it be to meet Ellen Degeneres???

OK - I'm just going to bitch about one more side effect, and that's it I swear.  I have neuropathy - bad.  I never experienced this with any of the previous chemotherapy drugs I used - but this one is bad.  It was just my fingertips at first that were numb, now it's the whole palm of my hand.   Also, my legs started feeling numb this weekend.  Not to the point that it is effecting my strength or walking or anything, just the nerves are effected to the point where they have a numbness to them.  Both legs, the whole legs.  Sucks.  Totally sucks.  I may be setting myself up here, but I am praying that after the third cycle (which ends after my next treatment) I get scanned and hopefully they tell me it's all gone and I can have a break.  Please.  I need a break.

OK - done.  Now I need to get back to the trust part.  Ironically enough, my devotion today was just about that - sometimes I think God has a sense of humor about this with me.

"Trust Me, and don't be afraid.  Many things feel out of control.  Your routines are not running smoothly.  You tend to feel more secure when your life is predictable.  Let Me lead you to the rock that is higher than you and your circumstances.  Take refuge in the shelter of My wings, where you are absolutely secure.

When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities.  Instead of bemoaning the loss of your comfort, accept the challenge of something new.  I lead you on from glory to glory, making you fit for My kingdom.  Say yes to the ways I work in your life.  Trust Me, and don't be afraid."

I have to be honest, I read this and at first was VERY irritated at it.  Growth opportunities???  I'm sorry, but I'm a little over the 'growth opportunities' already.  Have I grown through this disease?  Lord yes, and I am grateful - but I am tired.  Then, I try to quiet my soul, and know, that anger is really just fear - and I need to turn my fear, into faith.  If I get out of my head long enough and actually allow myself to be brought to the rock that is higher than my circumstances, then in fact, I do Trust Him, and I'm not afraid.  Shit.  Sometimes I hate it when He is always right.;-)

God Bless -

Dina

Wheel of Chemo - where will it land this week?

Had the most fabUlous weekend.  First off, I luv luv luv Holy week - I just relish in soaking up sermons and scripture so I can continue to learn more and more about Jesus.  I get so excited about it.  Corny, yes.  Then had my husbands cousin and her husband and their two precious little girls come and stay with us over the weekend.  It was so much fun.  When I first met Peggy, it was like I had already known her forever.  Have you ever met someone like that?  We just fell into such an immediate comfortable conversation, it was lovely.  So I was so excited to get to spend more time with her and her family.  Our girls just got along swimmingly, and to have my home filled with giggles and laughter and love - was just the bomb.  Also getting to share our church with them today meant more to me than I can express.  So sad to see them pull away today - the house was so quiet.  It's so funny what people bring into your life unexpectedly.  She is such a great mommy to her little girls, and watching her mother them showed me a calmness that I need to bring to my own mothering.  I've lost that lately, and thank you God for showing me this through my wonderful new friend.  She also says Yes much more than she says No to her girls.  And I'm not talking about them asking for 'things' I'm talking about when they ask her and her husband for 'time'.  Playing, coloring, trampoline, being silly outside - anything.  I need to do that more too.  So thank you Peggy and Brian, for being awesome parents, friends, and showing me some things I need to work on myself.

On the cancer side of life, my blood work which was drawn twice this past week is climbing, but slowly, so once again, no soup for me this week.  Which was bittersweet I guess - glad to feel good for our time with our guests - but really want to um, like kill the cancer too ya know?  I guess since my levels are down it means the medication is still working, I don't know.  Some say that's true some say it's not - does anyone really know?  I like to say my hair fell out cuz the medication is working, but I've heard that is bullshit too - it sounds really good when I explain it to my girls, so that's my story and I'm sticking to it.  I get my blood drawn again on Wed, then we will see where we are.  Oy.  Hate this not knowing.  Trust.  Trust. Trust.

I'm pushing for my treatment to at least be every other week if not every 3 weeks.  I can't keep doing this blood level dance.  So tired of this.  It's draining emotionally, it is driving me crazy from an organizational standpoint in trying to arrange childcare for my kids - and as long as it doesn't screw up the effect of the medication - it would really make my life easier.  Then I start thinking that I need to finish this cycle, then do one more then I get scanned - and I initially think YAY!  but then I think SHIT! cuz I remember the mental dance I do when I have a scan.  I feel like I pray and pray and pray for a certain outcome and it ends up being completely opposite of what I pray for.  I'm so tired of that.  I need this drug to work, it has to.  I don't want to manage these side effects for a year - can you believe they have someone who has been on this for a year?  Ugh.  I mean, ok - yes, I'll do it if I have to.  Of course I will, but I'm really starting to weigh out this 'quality of life' thing.  I've had a taste of life on treatment - and this sucks.  I can manage most things, I don't want this.  This medication sucks, plain and simple.  We'll see.  I just have to wait and see.  And pray.  Pray.  Pray.  Pray.

I watched the movie 'Jesus' today with Madeline.  She watched the whole thing w/ me - all 3 1/2 hours - just the two of us.  It was awesome.  Every night at the dinner table we have a little ritual we do by each of us taking a turn telling the family what the best part of their day was.  Did you know that Madeline's best part was watching that movie with me today?  I beat out the Easter Bunny, the egg hunt, the candy - well, I didn't, Jesus did.  Pretty cool.  Happy Easter.

God Bless -

Dina

The Hallivan Dance continues......

So, get this - my blood work comes back completely fine from my Wed draw - which I get the results from on Thurs, green light to Goodyear, right?  So we get there on Friday and we are ready to go - I was only a little hesitant as my side effects were still kind of in full force and the thought of having another treatment gave me a little fear of side effect overload - and my blood work was once again in the hole.  Can you believe this??  My white blood cell count went from 10,000 to 2,000 in less than 48 hours.  My doc even said he hadn't seen this before.  He ordered my labs again just to double check because he didn't believe it.  Crazy.  So home we went.  I'm going to get labs done on Monday and see where we are, then just take it from there I guess.  I'm back on antibiotic again, and just realized I ate an entirely fresh organic salad tonight with dinner.  Ooops.  So there you have it.

As I process these events, I am trying, so hard, to just let it be what it is supposed to be.  I mean, thank God they did do my labs, right?  They didn't just go off the Wed results, they do my labs every time and for that, I am truly thankful.  However, I, if you haven't figured this out yet, am a planner.  I like to know when things are happening, where, for how long, and how much it is going to cost if any, so I can organize my life.  I would love to be one of those fly by the seat of your pants kinda ladies, alas, I am not.  So when these last minute change of plans things happen, it really throws me - physically and mentally.  One, it freaks me out my body is doing this - it is surreal to know I can feel one way, and my body behaves completely opposite.  More on that later.

So hopefully I will be able to have treatment next Friday, and I just should probably lay low until my numbers come up again, but I must go to church tomorrow, I just can't NOT go.  It fills me too much to miss.  It feels lately the more I try and go with the flow and work this new treatment into my life, the more it continues to change.  Like I'm supposed to be paying attention to it more, or in a different way - I don't know.

The trip to Goodyear was not for nothing.  I had a really powerful meeting with my Mind, Body, Spirit guy which turned out to be extremely powerful for me.  He and I have been discussing my relationship with my mother.  It has been a very interesting dynamic between my mother and I as of late - trying to play the daughter role to an ailing mother, watching her fight her own stage IV lung cancer, and trying to adapt to the inherent role reversal of the child suddenly parenting the parent.  Problem is, I think I'd be so much better at this transition if I wasn't fighting stage IV breast cancer myself, thus subconsciously putting myself in a position as a daughter who really wants her mom to mother her.  It's like we are both fighting for the child role.  And she's really winning.  I need to give her some grace.  Her choices about her life,  I need to forgive her for her addictions that have guided her much through her life.  I never considered the biological piece of her, but both of her parents were alcoholics, and that has to factor into her 'person' and what she has gone through her life.   Fact is, I've been pissed off about it all these years, bringing it into my relationship with her, while she just carries on as usual.  Only hurts me.  I don't have to agree with it, and I won't forget, but I need to forgive her.  Jesus said  'Forgive them Father, for they know not what they do'.  If He can forgive complete strangers for doing the horrific things that were done to him, I think I can work at forgiving my mother for choosing her addiction over her life.  I do feel that yes, there is a human choice here too - she has always had the power to choose to drink, choose to smoke - but I also think some people are just stronger than others, and some people are strong enough to make those choices and fight right through them to the other side.  Some are not.

I've got neuropathy this time, numbing of the tips of my fingers - so I have found myself dropping things more often.  Also slight numbing of my lips.  Annoying more than anything.  The mouth thing has really been the most frustrating - nothing tasting right - and such dry mouth - so gross.  Back to the extreme constipation too - major ouch and bleeding hemorrhoids - so much fun.  I just want to do this, get it done, and then stop this chemo thing.  I'm trying so hard to trust.  Trust.  Trust.  That He knows what is best, has trusted me with this suffering.  Truth be told?  Some days I want to just stay in bed and sleep.  Sleep it all away.  That's normal right?  Funny, when I start thinking this way, Ginger will come in and ask me to tickle her back to help her fall asleep, or Madeline will call for me to come in and snuggle with her.  I know that is not by mistake.

I've been going back and forth on completely shaving my head.  I'm holding onto this patchy 1/4 inch hair, so I can have some resemblance of a hairline for whatever reason.  I have decided however that I will henna tattoo my head, I think that would be wicked cool.  That way maybe I would feel comfortable walking around in public without a scarf on.  PJ said he would do it, I found a website, 'chemo chicks' that sells these kits to make the paint and has the templates.  Super excited about that.

Trying hard this evening to keep my perspective.  It wains sometimes, truth be told, and tonight, is one of those nights.  I can feel my liver when I touch my abdomen.  I can feel it's outline, and I don't have to press very hard at all.  What does that mean?  That it's inflamed?  I have no frickin clue - just know I haven't been able to feel it before, not like this, not ever.  Yet, once again, I feel pretty much fine.  Tired, yes, but I jumped on the trampoline with my kids yesterday, and cleaned the front and back porches - doing chores, making dinner, blah blah blah.  So frickin frustrating to feel one way and have your body behave in a completely contradictory manner - so out of control feeling.  I guess I get the scripture 'the spirit is willing but the flesh is weak'.  Sorry, this is getting depressing now, isn't it.  Ugh.

Well, hate to end on a depressing note, but I'm so sleepy now, and it's very late.  I'm going to go the scripture my blessed babysitter, Anna, spoke to me when I got home from CTCA on Friday, she said it's her 'life verse' - which is pretty inspiring considering she is a mere 16.  Romans 8: 28 - get  how frickin appropriate this is, especially now that I look at it again after writing this post:  ' And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them'.  Wow.  Thanks Anna, you rock.

God Bless -

Dina