It’s Back…

My creativity, my desire to create, my interest in creating and my knowing how much creating helps me – helps me heal from the inside out.

I am not sure if it is the fact that Jill came and helped me clean/organize my craft room, if I started taking Lexapro again or if I have made a VERY conscious effort to pull myself out of this slump, talk about it and lean on God, family, and friends more – whatever the case, I am feeling so much better knowing just knowing that I am feeling better – make sense?

Anyhow, I made this canvas for Ian’s room.

I want him to know in his heart that God loves him, that he is precious and perfect in God’s eyes no matter what. I want him to know this, to hear it on a daily basis and I figured it hanging on his wall for us to read to him daily is a great way to ingrain it in him.

I am really enjoying painting again - it does help me heal.

Yes…

Yes I am ok – well, getting there
Yes I started back on my “happy pills”

Yes my body is one big unbalanced mess

Yes I am starting to work out again

Yes the help you send/give is MUCH appreciated

Yes I am so ready to get my PET scan

Yes I believe in my heart that all the cancer is gone

Yes I still leave it all in God’s hands

Yes my face is crazy dry

Yes I have neuropathy in my left thumb and index fingers

Yes my other nail beds fill like I smashed them in a door

Yes I still remember to laugh – really a lot of the time

Yes I love on Ian daily

Yes it warms my heart

Yes I thank God daily for Eric

Yes he is my strength

Yes I let Ian watch too much tv

Yes I am ok with it – for now

Yes I am creating again

Yes it helps me heal

Yes I will continue to talk about my grief

Yes I know it helps

Yes I promise to not pretend all is well when it is bad

Yes I know my normal has changed

Yes I am starting to accept it

Yes I promise – I will be okay

Yes I am sure

A fine line

A fine line


between too much

and not enough

A fine line

between care about me

care for me

and

leave me the hell alone

A fine line

between asking how I am

and

ignoring the fact I go to chemo 3 out of 4 weeks

A fine line

between my smiles

and

my tears

A fine line

I walk everyday

A fine line

that sometimes

I am on both sides

at once

Neither side is better

Neither side is easier

Neither side is safer

A fine line

of feeling good

of feeling like shit

A fine line

of living in limbo

of not knowing what tomorrow will bring

A fine line

that can blur all too easily


I actually wrote this back in March, right after I started chemo...
I still feel this way most days...
It is hard to walk to the line...

My life right now – in music

My friend Amanda sent me an email last week titled “Friday Friday Friday – Gonna Kill my Cancer on Friday” and asked me if Friday was my fight day. I told her I needed to start listening to the theme song from Rocky and that I wished I felt good enough to feel like fighting....seriously, I wish I felt good enough to knock the sh*t out of something.

Yesterday she sent me the following “Its Game Time” theme songs:
Because Rocky is a bada*s and this can get anybody ready to fight! And yes Amanda, I have watched all of the Rocky movies.

She asked if it was offensive to compare chemo to an NBA game - I don't think so.  It is all about winning and saying suck it to the other team or cancer.

This she sent because who doesn't love this scene from Footloose?!?!

Now here are my music picks for my life right now:
THESE NEXT TWO DROP THE F-BOMB SO DON'T LISTEN TO WITH KIDS AROUND:
This is my ode to cancer right now:

Not sure why this Pink song made me cry the other day when I watched them perform it on "The Voice" - it made me think of how God thinks of us - we are f*in perfect in His mind - offensive to think of God and the f bomb in same sentence - yes a little but it packs a punch.

This next one is by an guy names Jami Lula - I LOVE his stuff.  It is spritual and I love the tone and message of all his songs. I like to think of my this as my true theme song - there is a whole lotta healing going on

I am sure there are many, MANY more - I could do several posts on different points in my life in songs...music speaks to me in a way not many other things do and the funny thing is that I am NOT musically inclined at all.  Different songs hold so many different memories for me - I can hear a song and it transports me back to a moment.  I would like to be transported out of this moment - writing this post in chemo.

Out.Of.Control

I feel 100% out of control in my life right now – in so many areas I don’t even know where to start.

Out of control with my body and what it is doing. I “thought” I had my after chemo schedule down but these past few weeks nothing is the same as it was. I am thoroughly exhausted all the time, I have a dull ache most of the week and my stomach is doing so weird things.

Out of control with the house – now don’t get me wrong, I have never been one to really keep the house all that picked up, but this is something that is adding to my lack of control – a messy house, but I don’t have the energy to pick it up daily.

Out of control with my emotions – I feel I am short with people, I feel like I snap at nothing with Ian, I feel like I never know what is around the next corner.

And what sucks even more is the more I feel out of control, the more I try to control something and being as I am with Ian most days this leads to me trying to control his actions – which is the silliest thing ever trying to control a 3 year olds actions.

The actions I am trying to control aren’t even important in the grand scheme of things – I just want to be control of something. And I find myself looking at me through his eyes and wondering what happened to his mommy who was healthy, active and easy going but now a ball of stress because I feel like everything else is crumbling around me.

I have to take a step back and ask myself if this really matters and the answer is most always no – it just sucks that I have to do it so many times a day.

Chemo Chornicle 2.8

First of all, it completely freaks me out that I have had 8 rounds of chemo. Last time 8 was my magic number – I had 8 rounds total and I was done – or so I thought.
Today was an easy day in terms of chemo. My appointment was at 8:15, so it was up and Adam early around here today. Gina told me that we could bring Ian over in his pajamas today, and he was beyond thrilled about that!

It was hard in terms of realizations. I was/still am extremely tired – not sure if I am just wearing down, the fact it is hotter than h*ll or what. We went to a small water park Thursday and for some crazy reason Ian didn’t nap. I ended up going to bed at 7:30 Thursday night and slept ALL night. Yes, I slept 11 hours – crazy.

I asked the nurse when she brought me the sheet with my blood count read outs on it if my red count being a little low was the reason I am so tired. She kind of laughed and said my red isn’t really “that” low and I am going through a little thing called chemo. And she nailed it when she said, “and I bet you don’t slow down – you just added this to your to-do list” and she is right….to a point.

Up until about 2 weeks ago I was going all out – did everything I had been doing but I broke a few weeks ago…and I broke hard – like my whole egg cracked and my yolk was running out everywhere. I realized I couldn’t do it all anymore and when I was totally honest with myself, I realized I didn’t/don’t want to do it all. Yes, I was the only one expecting me to do it all – I wanted to/still want to be super woman but I now know I have to say no – I have to say no to what doesn’t help me heal, doesn’t help me rest, doesn’t help me be the best mom, wife, me I can be – I have to say no. Saying no is hard – HARD for me. I want to do everything I am invited to do, I want to be there for my friends as they have been for me, I want to but the reality of my life right now is that I can’t…not how I used to be able to be there. Like me and my life as it changes, my relationships have to change also.

My family, my health and spirituality are the most important things to me right now and always (sometimes it is easy to forget that), so if I have to miss get-togethers, lunch dates, play dates, taking orders for Leopards & Lilies and many other things – I need to, I have to, I will.

Just when I think I have it all figured it out, life dictates a new role for me.

Against the stream...

What you choose to dedicate your time to matters, not just for you but for all those who are affected by the withholding or the deliverance of your unique gifts. What are you dedicating your time to? - Debbie Ford


I get these daily “life lessons” or whatever you want to call them from http://namastenow.com/

I love them. I love reading these little tid bits every morning with my cup of coffee – yes, I still drink a cup of coffee every morning and I read my computer instead of a newspaper – I don’t even go to real news sites – I don’t need that negativity – in the morning or ever…WOW, I totally jumped ship on that little rant.

Back to the quote above – it was funny, this came when my hubby was deciding to change jobs. He had a very “cush” job where he was, but his heart wasn’t in it anymore. He didn’t feel he was using all his talents to better himself or the whole anymore.

He took a big step and changed jobs. He got lots of “whys” from others who are still at old job – in terms of why leave a gravy train, why leave something you know, why leave “this”? But the thing is, “this” was filled with negativity – people always talking about what was wrong, what they weren’t getting, blah, blah, blah. He left lots of stock options but in the end, those stock options, that money would never change the fact that he needed – craved something new, something better…something his heart was calling him to do.

He stepped out, got a fresh breath of air and took a leap of faith…and I couldn’t be more proud of him.

He decided to swim against the stream instead of flowing with it – where as going with the stream it was easy but it wasn’t getting him where he needs to be.

It is hard to swim against the stream. It is hard to leave something you know for something you have no idea about. It is hard to take a deep breath, tell yourself you can and let go of that security blanket and walk away…it is hard. But it is oh so worth it.

Believe me, I am preaching from experience here. I held so tight to that security blanket…the security blanket I called my job before my first round of breast cancer. I knew my job, I was good at it, but it didn’t give my spirit a boost, it didn’t make my heart sing….it didn’t do much of anything besides give me a paycheck and guilt that I wasn’t home with Ian. I was scared though – I was scared of what life would be without that paycheck. I now look back at the sillyness of that – yes at first it was a little tough to know I wasn’t “contributing” to our bank accounts but then I realized I was contributing to life, Ian’s spirit & heart and us, our family. Once I stepped out of the “norm” and looked at us, our lives, what I/we need – there was no choice – my heart had spoken and it was time for me to swim against the stream.

I am not saying what I did is what all people want. But I am saying if your heart is telling you that something needs to change, something isn’t right – just listen. You don’t have to do something about it right now but listen – your heart knows the way and it is has an amazing story to tell if we will listen.

Continuing on

I received an email from a dear friend on Saturday titled continuing on after she read my chemo post and the news about my “done” not ever really happening.
It took a bit for everything to really sink in – as it usually does with me. I need some time to process it all, sort it out and get my feelings in order – that is why I have never liked fighting in the heat of the moment – I don’t have my argument together!

She wrote to me, “I am not trying to find a reason or lessen the impact, but the thought that came to me is that this will keep you in the zone. Too many times we stay centered in Spirit when we are in crisis and have every great intention of keeping up with our meditation and prayer when it is over, but then life gets hectic and we go back to our human lives…”

And the funny thing is I have thought this before. I have thought what if I got cancer this second time to make me write again…really write from my heart, about my spirituality, about life – the good, the bad and the ugly. I sure didn’t write from my heart after I was “cured” of cancer the first time. It happened a little at a time but I got back to the surface stuff that I really dislike. I really dislike the vague how are you’s, the “I got a new purse so I must be happy”, the fakeness – the fakeness that we can all be.

I read about this book called The Invitation by Oriah. The forward of book reads: “It doesn’t interest me what you do for a living. I want to know what you ache for, and if you dare to dream of meeting your heart’s longings…I want to know if you can see beauty, even when it’s not pretty, every day, and if you can source your own life from its presence…It doesn’t interest me where you live or how much money you have. I want to know if you can get up , after a night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children…It doesn’t interest me where or what or with whom you have studied. I want to know what sustains you, from the inside, when all else fails away…I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.”

Yes the surface stuff is easy. Yes the surface stuff is a lot less scary. Yes the surface might look prettier on the outside but if we stay on the surface, how will we ever know what is in us – really in us?

So yes, it is true that I will be in maintenance mode forever but I at least it will keep me real – real with myself, real with God, real with life? I guess I can’t do anything about it except accept it and embrace it.

Chemo Chronicle 2.7

I didn’t know what to expect going into this appointment – would she tell me no more chemo like my friend heard a few weeks ago, would tell she me we were going to change my schedule – do less or more chemo – I just didn’t know.
The getting there was much easier this morning since Ian stayed home with my Aunt verses us taking him to Gina’s – hence we didn’t have to get him dressed and put together too – I might start sending him to Gina’s in p.j.s – she doesn’t know this yet though! :-P

The nurse doing my port was quite the character and really had me wondering if I should be letting this guy stick me in the chest…then he told me he “calms” people down by feeding them all this bullsh*t, then POKE and all is done – well it worked – I was NOT thinking about the port poke with him telling us these stories.

When Dr. H walked in she said, “There is my girl with the great scans” and gave me a big hug. That made it all real – I did have great scans…they didn’t accidently call the wrong person (yes, until I heard it from her I didn’t really want to believe it).

She did say she was unexpectedly surprised by how well the first two rounds of chemo worked and that honestly she had never seen 2 rounds of Abraxane work that well – and I told her I was an overachiever. And what I thought about me having 2 spots left on my lungs – I only have ONE TINY SPOT left. We still don’t know about the bones but will in 8 weeks!

And yes, for those wondering – my oncology skills are spot on! 2 more rounds of chemo (so 6 more treatments) then a PET scan – I told her that is what I said she would say and we decided I might not need an oncologist anymore!!

A few things I didn’t know or think about - I didn’t know HOW many spots in my lungs I started out – like 20 or how big the big one in the middle of my lungs was – like a racquetball.

I didn’t think about my “maintenance” after I was done with chemo – I thought when I am done, I am done – not the case. And the thing is, they don’t really have a maintenance protocol in place for triple negative people – for estrogen positive there is tomoxophin that people usually take for 5 years to suck the estrogen out of their bodies, for HER 2 positive there is herceptin (not sure what this does) but since I am trip neg my cancer isn’t caused by something producing too much of something. She wants to talk with the MD Anderson doctor to see if they have or will be having any maintenance trials happening soon and if not, I might stay on abraxane once a month/every six weeks until something comes out. The good news is triple negative is the “hot spot” in cancer research right now, so hopefully there will be a maintenance drug out in the next two years that isn’t chemo.

I was a little in shock about all this yesterday – I just didn’t think about having stuff to do after chemo – I just so wanted to hear – 2 more rounds and then done, done, DONE – not the case….at all.

I was talking to my friend who got clean scans after 6 months of chemo and it was nice to talk to her about this. We both agreed – it is hard to be excited – yes, it is an absolute miracle but it isn’t over – will it ever be over – the thoughts of cancer, having some sort of cancer treatment going into our bodies – cancer talk – it might not ever be over and that is hard to accept.