Where do I even begin?

To say the past 4 weeks have been hard, unnerving, life changing, healing and so much more is a huge understatement.

I got out of the hospital thinking, “oh, no big deal that I just had brain surgery” – well that no big deal caught up to me quickly and with a fierce force.

That following Monday, I had to jump right back into treatment and had zometa on top of it to boot.  Then after treatment that day, my mom and I went to speak with the radiation oncologist.  This meeting didn’t go as I had expected – there was talk of whole brain radiation, half brain and possibly ¼ brain – none of which I was expecting. I was expecting to radiate just the place that there was cancer.

I left there feeling defeated and scared. Brain radiation freaks me out for many reasons and if all truth be told, I don’t want to do it at all.  I will do it because Eric has researched the heck out of it and it is better for me to do some sort of radiation…but it still scares me.

Tuesday and Wednesday I was able to rest with no appointments, which was great. All the information was still sinking in and the doom and gloom was starting to sink in to.

Thursday was more treatment. I still hadn’t bounced back from zometa so I felt like I was kicked down again.

Friday, Eric and I went to speak with the CyberKnife Dr that my neuro Dr recommended.

Now here is the thing – I have been beyond blessed when it comes to doctors – their love and committment to me is out of this world.  So of course I was hoping to get the warm and fuzzies from this Dr – I didn’t.  He is very intelligent and has a great success rate at what he does, but his ability to talk to me in the words I need to hear…well, it wasn’t happening.

So we left there – I was even more confused and scared than when I went into this.

We went to eat at a local pizza place because it was after 130 and I was starving, and then the pizza wasn’t any good.  I started to cry. Yes – I was crying in the middle of the pizza place – it really wasn’t the pizza I was crying about – it was all this. I had been trying so hard to hold it all in, to hold it all together, to tell myself it would be ok – when in fact I don’t know that and I am having a hard time believing it. It sucks…big time.

Weekend came and went – I hung out in bed a lot. I was still feeling “floaty” and out of my head.  I could see my hands in front of my, but it took a lot to connect them to my thoughts – weird I know.

Monday was treatment again.

Wednesday I went to see my neuro dr to get 39 staples removed – yes, 39. It didn’t hurt as I thought it would – it was just uncomfortable. And after talking to him and the radiation, we decided to go with the cyberknife.

Thursday was treatment again.

Then we left on Sunday for Little Pink Houses of Hope retreat (more on that later) in North Carolina.

We are home now, treatment starts again tomorrow and hopefully I will figure out when/how long radiation will be. I guess I am now in the place of – if I have to do this, let’s do it and get it over with. It doesn’t mean I am less scared or even want to do it, but I know I have to.

All in all I am just “eh” about everything. I try hard not to put on a face of “oh it is alright” because in reality it isn’t – it sucks. Only very few people will actually see my real face through this and for now I have accepted that.  It is easier to put on the “oh it is alright face” but from that, I don’t think anyone really knows…not sure anyone really wants to know…it isn’t fun, it isn’t pretty and yes, it is very scary.

Set me free and recuse me from the mighty waters – Psalm 144:7

I am home and feel set free in a whole new way.

I had so many quiet conversations with God while in the hospital recovering, holding His hand, leaning on Him for strength, and having full faith that even with this bump in the road, He has my back, He has bigger plans for me – plans for me that without all this craziness I would have never been for – I would have never knows these plans.

Now don’t get me wrong – I don’t believe I know the whole picture of the plans, but I do believe I have an idea of what He needs me to do.

And instead of me trying to figure out how to go about writing a book and getting it published I am going to just start writing – writing chapters, writing whispers to my heart, writing what I feel like He needs/wants me to say about all this.

BUT on that hand, if anyone out there reading this has any tips, please feel free to pass them along.

I am also excited to start painting more.  I had vivid pictures in my mind about new paintings, new styles, and new ways to incorporate God’s love into them to share with the world.

I will go see Dr. H this morning to set up radiation and according to her nurse; the talk with the medical director of BSI went very well on Friday.

Please continue to pray that I get back on BSI and head radiation gets any last straggler that might think it can hide out.

Thank you for all the prayers thus far and being with me in so many ways on this journey.

This person I am...

I don’t want to be brave.

I don’t want to be inspiring.

I don’t want to be strong.

I don’t want to have to be this person I have to be…

This person I am

This person who doesn’t have a choice

But to be strong

To be courageous

I want to breakdown

I want to say f*ck it all

I want to eat my pain away

I want a magic wand to wave

And all this shit to go away

Tomorrow is the day – brain surgery

I can’t say I am not scared

I can’t say I can make heads or tails out of this whole situation

I can’t say I am ok

My power works best in weakness.

My power works best in weakness.

2 Corinthians 12:9

It is true – I never notice the power, the strength, the grace of God more than when I feel weak, scared, lost…

I don’t know why, but it always amazes me when I do my daily devotional and when I read it, it seems like it was truly written just for me and the exact time I need it.

In church Sunday, they sang a song that more than hit home – it touched my heart in a deep place…a place that used to not get touched much, but as this life continues a place that gets touched more often and because of it, I am a different person.

I pray for you

You pray for me

We watch God change things

Yes I am scared. Yes the thought of the upcoming surgery freaks me out. Yes I want wake up and realize this is a bad dream. Yes I am trying to control other things because this is so far out of my control. Yes I have been praying like a mad woman. Yes I believe all this will ok. Yes I believe I will come out of this with flying colors, a cool new scare and a stronger heart. Yes it sucks…big time.

It has all really hit home today – the bigness of the whole situation…making the appointments, having people come in to be with us…I feel like I am arranging my life from a faraway place.

I still get waves of this floating sensation – it is a half dream/half-awake feeling – then the reality of it all crashes into me and then I am fully awake with WTF is happening/how did this happen/when will this stop and so much more.

The next few days will be crazy.  Please know that all your messages, emails, etc are truly loved and welcomed – even if I don’t answer back.

Tomorrow

1045: meet with the neurosurgeon

After that; go do pre-op check in and talk with the drug dr (I can NOT for the life of me spell the correct word)

Thursday

800 PET scan

Get clear PET results and word from BSI company that I can stay on BSI and continue on it next week

Friday – go into surgery

I have had a lot of people ask what we need – I don’t know.  I wish I knew, but I just don’t know at this point.

For now, please just pray for us.

I will have Eric send an email on Friday.  If you would like to be added to the email list, please shot me an email at reneelinke513@yahoo.com

SO…

I have tried to come up with witty titles and well, the only one I am able to think of is:

Third time is a charm?!?!

Yesterday was a day like no other. Ian and I were running errands and after our stop at Pier One, we were walking down the stairs to go Party City to start looking at Halloween stuff…because you know…why wouldn’t we start looking and thinking about Halloween costumes two months in advance?!?! Exactly.

While walking down the stairs my right side kind of went numb – not all the way numb but for me to get it to work, I had to think the thought – “move right hand” over and over to get it to move. I called Eric right away because I was thinking driving wasn’t the best idea! Then Eric and I thought it might be from low blood sugar, so we went to get some lunch. At lunch, the numbness got worse and my right foot was heavy…I could still move it, but it was heavy and weird.

I called Dr. H and she said go to ER...YIKES that freaked me out.

 Got to ER, Dr. H had already called, so we were able to go right back..hey, I guess having an oncologist that rocks has its perks?!

Eric left me there and took Ian over to Teri’s because we had no idea how long we would be there and let’s just say, a 5 year old + ER doesn’t equal happiness.

They did an immediate EKG then Dr. H ordered an MRI.

Waited for the MRI results…

ER doctor came in to give us the news…definitely NOT what we were expecting.

ER doctor told me that there is a mass in my brain.

Not sure why, but every time I get this news, I expect the doctor to pause and say, “Just Kidding…you are good to go…get on out of here.”

I waited for it…for him to say those next few lines…

He didn’t.

So me and Eric did what we do – we hug, we cry, we say it sucks, we hug some more – then we shake it off, pull on our brave pants and ask what comes next…where do we go from here.

The neurosurgeon came in to talk to us (I thought he was at the hospital and just stopped by, but come to find out from Dr. H this morning, she called him yesterday and asked him to stop by to talk to us) score 14,857 for Dr. H being awesome!

He showed us the MRI and the mass is on the back of my brain. It is 2-3 cm large and mostly liquid.

As far as having a mass on the brain goes, this one is in a REALLY good place – it isn’t in a place that could affect memory, speech, personality, body movement, etc.  Gina told me they better not take the crazy out of me…don’t worry…I will still be me…just without a piece of my brain.

Next steps: PET scan on Tuesday or Wednesday; consult with brain Dr; surgery on Thursday or Friday.

In the meantime, mom and Tammy are flying in today. Rachele and dad will be here for surgery. Eric’s parents want to come also, but I think we will have them wait a few weeks.

Dr. H called to touch base with me this morning. She said if I was to have to get another tumor, this is the best place to get one – it can be cut out, radiated and good to go.  She laughed and said it sounds weird, but more than anything this is just a major inconvenience – which I say all the time…cancer is just one big pain in my ass.

If you are the praying type – will you please pray a few things:

 ~ Dr. H gets approval for me to stay on BSI (trial drug – they MIGHT see this as me being not NED, but she said that is stupid because systemically, I am NED.  None of the chemo drugs I have had can cross the blood brain barrier…therefore; there has been no way for any drugs to get to my brain.)

~ Surgery is easy and I don’t miss any of my brain

~ PET shows no evidence of disease

I know Eric & I have the strength and grace to make it through this bump in the road.

We are faithful that God is good and He does have a bigger plan for us.

Does that make it suck any less…no, it still sucks, but it will be ok. 

I still feel that I have a long life ahead of me. I still feel like I will be here to help Ian grow up into an amazing man, to love and support Eric, to make my friends laugh, to simmer my mom and sister down, to paint to the world, to write a book…to laugh and love.