A New Kind of Normal: Life after Cancer - The Beginning

(Originally posted on our CaringBridge site: Written May 28, 2013 1:54pm)

Wow, I can not believe that it has been almost 2 years since I last updated this.  There are definitely a number of reasons why.

First, we were in remission.  This was intended to keep all those who cared informed of Brandon's progress through the disease and treatment. 

Second, we were now navigating a whole new area of life, AC, After Cancer.  The normal life of BC was loooong gone and forgotten, and the routines of During Cancer, DC, were now not needed...so figuring out what AC looked like was similar to learning how to walk again.

Third, as stated in my last post in July 2011, it was then my body's turn to act up and turn on me, leaving me very sick and relatively bedridden for quite some time, and not in any state to update the website.

But recently, Brandon and I have been following numerous other people's battles with cancer, many through CaringBridge, and as one patient recently won a very difficult battle with cancer I found myself so curious as to how life is going for her AC.  This then led to a pressing feeling to get back on here and document the journey after cancer, as many people have privately contacted us wondering how it has been going.

I am kicking myself in the butt for not journaling much at all in the past 2 years.  I was amazed at how much it helped me through cancer, and I'm afraid it could have helped me a lot in navigating the difficult road after cancer, had I actually done so.

I am terrible at consistently writing in a journal, I think because I can't write as fast as I think, and my handwriting gets terribly sloppy, then the joint pain in my hands makes it harder to write and keep up with my thoughts, and I get so annoyed with my sloppy penmanship. 

Yeah...I'm just a little Type-A...

Then, on top of that, I get so distracted with what context I should be writing in.  Should I just be spewing my thoughts randomly onto the page?  Should I be giving background to the thoughts I am having?  Explaining the situation at hand so that the reasons for why I am upset make sense?  Does that even matter, cause who the heck is gonna read it anyhow?  But what if I look back on it someday and it's all just jibberish because I have no idea what I was talking about? <SIGH>

I did try type-journaling for a while.  That helped a lot with the handwriting issues and getting my thoughts out quicker, and it allowed me to edit.  Yeah, yeah - I know, editing is not the point to journaling but I can't help it. 

Regardless, it didn't help the other issues, and it didn't help me to desire to write it.  Type-A people usually find it completely senseless to write something that nobody will ever read.  A waste of time and pointless. Yeah, maybe I would read it someday - but when the handwriting is so sloppy, how could I?

But I did find that I consistently updated this site.  Why?  Probably because there were people who read it because they wanted to follow Brandon's progress and our journey through cancer.  They wanted to know how to pray for us.

But also because it was therapeutic to me.  It helped me to process the situation and organize all the thoughts that were constantly spinning in my head.

Since July of 2011 two things have happened.

One, a Hayslip/Wilkerson family friend gave us the sweetest gift, a photo book of all of my CaringBridge entries of our journey with pictures, scripture, song lyrics and the guestbook entries.  A beautiful chronicle of our battle with cancer.  And I treasure it so much!  It is something I had thought of doing many times, but we were still too close to that difficult time, and I could not yet bare to go back and reread it and experience it again.  But now we have it to look back on, and remember how God got us through, and how we were shaped into the people we are today by that life changing time.

Two, I have been contacted by multiple people in regards to our battles with lupus and cancer.  How did you/Brandon get diagnosed?  What were the symptoms?  What tests should I get done?  How did you/Brandon respond to this treatment?  Did you/Brandon have this side effect? 

To be honest, if I did not have the CaringBridge to look back on, there is a lot I can not remember!  And to this point, CaringBridge only documented our journey through cancer.  And really, only through diagnosis, surgery and treatment.  Just because the cancer is gone, it does not mean our journey has ended.  I wonder if others are curious about what the other side of cancer looks like for us, as I am curious about what it looks like for fellow survivors?

And when asked some detailed questions about my lupus the other day, I realized there are a lot of details to that journey of diagnosis and beginning treatment that are a jumbled mess in my head, and therefore not very helpful for my doctors or those who ask because of their own battle with lupus.  We can thank that to a common symptom called 'lupus fog'. :)

So, this may be more for my own benefit than anything else, but whatever the case, I'm going to take some time to update this site on our journey in the past two years. From Brandon's remission to my lupus diagnosis, to how cancer effected our decisions in purchasing a house, to trying to find normalcy in daily life, and living on the 3 week preventative treatment cycle and it's side effects, to mysterious new debilitating symptoms for Brandon, to more cancer diagnoses in our family, and how cancer effects our family planning choices. 

Yes, we may have gotten rid of the cancer cells, but not a day goes by yet that is not effected by the imprint that was left behind.

Many probably think what I did, that the battle was over and it's back to normal...

WRONG!

I was completely unprepared for the challenges ahead of us.  I am not saying this is everyone's story, but it was ours.  I wish we were the people who finished treatment and left cancer in the rear-view mirror and never looked back.  But our reality was that it has trailed us ever since, sometimes closer than others, and it will forever be a part of our life.

So on to the new chapter to Our Journey: the big 'C',  I'll call it:

'A NEW KIND OF NORMAL' 

A new direction

It has been a LONG time.

I have started this post many, many times, only to just close out the window without posting or saving.  My words were not God-given, my heart not in the right place.  I don't even know what I am going to write today, or if it too will just be typed and let go.

I look at my last post and I don't  know how to skip from there to here, or from then to now.  What is important to share?  Why am I even writing this 'blog' now?  I guess I still don't know, and I really don't know why anyone would read it.

I can tell you why I think this post may actually make it into cyberspace, and why the others didn't.  From a couple weeks into the journey of The Big "C" I felt God's presence so strongly, and I felt compelled to share our story of the process.  Not just what we were going through, but more importantly God's presence and guidance through that season in our life.  As I recently read over the entire 'Caringbridge' website and then this blog I am so happy to see that that, in fact, was the take away of our story.  

So why have I not updated since our triumph over Cancer?  Why did I throw away everything I wrote since then?  Because God was not in it.  

I vowed with everything in me that we would not let go of our minute-to-minute dependence on God if/when we made it through that battle.  That we had been touched too deeply to return to our old ways.  That God made Himself so present that we could never go back to needing Him less.

But I am human.  And I let all too many things draw me away from seeking God in praise, in wisdom and in need.

It has been a long season this time.  From July 2011 until September of this year.  Far too long to be separated from my God.  Now, don't get me wrong.  I didn't pull any Amish 'Rumspringa' type deal!  I did not go explore other religions, and I surely did not loose my faith.

I guess the only way I can explain it is that I stopped pursuing God for wisdom and guidance in my life.  I did not give my troubles to Him and I did not frequently seek Him in prayer, and when I did, it was halfhearted.  The sad thing is that on many occasions I knew that the ONLY thing that would help me in the depths of the depression I was in would be to give it to God, ask Him for help, and be willing to listen for his guidance, and yet I still didn't do it.

But God.  

He waited patiently for me to wake up, buck up and come back to Him, and as I knew all along, He has been FAITHFUL.  He is leading me out of this depression, and leading me right back to Him.  All of my efforts for the past year have been like running in place.  I was not standing still, I was trying so hard to break free, but going no where except towards exhaustion.  Until I finally broke down and honestly asked God for help, and asked Him what do I do?!

And for the first time in over a year, I asked, THEN LISTENED.

'You have to come to me first'.  I heard it loud and clear. 

That's it?!?!  Deep breath.  Moment of self reflection.  Yeah...I guess I have been coming to ME first...

Ok God.  I can do that.  I WILL do that.

And the past few weeks have been nothing like the past 60 some weeks.  And I can only thank God for leading me back home, where I can take this on.

I never thought coming out of Cancer would take me lower than being in it.  I also never thought that the burden we would bear at such a young age would be so heavily weighted by health issues in every direction.  From my long awaited diagnosis of Lupus that I had been suffering from since 2008 and a multitude of other stomach and anxiety issues, to Brandon's preventative treatment side effects, to my mom's now active Non-Hodgekins Lymphoma, to my Grandmother's battle with dementia to my Uncles recent diagnosis of Pancreatic Cancer, to Brandon's Grandmother passing from a rare stomach cancer, and unfortunately the list goes on, both on my side of the family and Brandon's.

I don't know why God has allowed these challenges in this season, but I do know that God directed me to try to do something with it.  I still don't know what, but again, I feel directed to write about it.  I don't know why, because frankly I don't know what I am even supposed to write, but I do know that I am not feeling lead to delete this post as I have done every other I have tried to write since July of last year.

So, I'll keep on putting words on this screen til I feel God leads me to do something else more productive with my time and this experience. :) 

Thanks for reading, and I hope your time did not feel wasted, because I truly don't know if this pile of words is of any worth.

Blessings,

Christina

...compounding...

My heart is racing,
and pounding,
the rhythm resounding.

Deep breath in,
but it's sounding
louder with each beat;
resounding.

Close my eyes
but it's still surrounding
every thought
and compounding
all that's left of me to nothing
but abounding anxiety.

Lord, I beg you to infuse in me
faith so astounding
that I can't escape your surrounding
love and propriety.

...broken and tired, but yet inspired...

This season has been so trying, so exhausting, so convicting, yet so inspiring.  It's truly amazing to see what God can do with any situation.

I cringe to think where I would be emotionally if I were being drug through this season without my belief and faith in God.  I know that I would have no hope, I would be clothed in misery and fear.  I would be so angry.

But instead, I am blessed to walk through this season, and at times I even find myself skipping.  I have hope, I have faith, I believe in miracles completely.  I have been blessed to have experienced some miracles in my own life, which have strengthened my faith immeasurably.  I believe in prayer and God hearing our prayers and having mercy on His people in need.

At times I am miserable, but they are short lived because God makes Himself known to me, and comforts me and strengthens me.  Most of all though, I am fearful.  I am scared of what is next.  I am scared of what God may test us with tomorrow, and what trial and suffering we will have to endure for His will.  But at the same time, after the initial shock, we can delight in seeing that He is using us for something in his beautiful plan.  How blessed are those that get to be used by God?!  I feel humbled, I feel unworthy, I feel unable. But I also feel privileged.  And I just pray to God that for what ever tiny part I get to play in His works, that I do it to the best of my abilities, and glorify Him for working through me, because if it were left up to me, I would ruin it all.....

Oh Lord, my God,
I come to you unclean.
Covered inside and out
with the poison of my humanity.
     You have filled my heart
     with Your Spirit unseen
     and brought to light
     my nature of pride and vanity.

As I clothe myself
in your timeless Word,
I'd be ignorant
not to see,
     my perception is poisoned
     the line is blurred,
     by all
     that is of me.

My desperate grasp
on all that will not fill,
my seeking
my own way.
     Bring first to my eyes
     Your sovereign Will,
     And lead me
     so I will not stray.

I so desperately want
to overflow
with Your love
that can not be denied.
     I long to leave myself
     and righteously bestow
     Your compassion
     far and wide.

Every single day
I know I will be allured
with the desires
of my eyes,
     Please envelope me
     and allow me to be cured
     armored against the empty promises
     of the Devil's deceitful guise.

Of this I'm sure,
I will fail,
but I'm comforted
with one thing,
     That you sent your Son
     to unveil
     the barriers between
     your beloved and our King.

So I need not fear
my inadequacies,
You have forgiven
every one,
     Every day anew,
     another chance to seize
     to be a better reflection
     of Your Son.

Amen.

...i cried to Him

I cried to Him...


The walls are closing in
more and more every day
just as soon as we adjust
more pain makes it’s way
into our already broken hearts
deeper through and through,
just one foot in front of the other
is seemingly impossible to do.


So where have you been
when the cancer found a home?
When the news got worse and worse?
As our life was over-thrown?


I’m now completely terrified
of what the sun will bring to light.
Where will our shadows fall?
Onto fight or onto flight?
Where do we go from here?
We are stuck in today.
We are scared to hope for anything
that might get taken away.


So where have you been
when the hurt overpowered my mind?
When the air wouldn’t fill my lungs?
When my knees buckled under the grind?


I cried out to Him.
In anger.
In desperation.
In frustration.


And He said...


Where have I been, my child?
I’ve been here all along.
I kept the cancer from going too far,
I made him extra strong.


Not only in the physical being,
but in his faith in me,
so that his righteousness could be seen
even when he’s weak.


I’m the One who brought the light
to cast upon your face.
Not to bring darkness in your shadow,
but to wrap you in my warm embrace.


Don’t be fooled, my beloved,
I don’t hold you captive in today.
I give you the gift of the moment
to leave tomorrow’s troubles out of this day.


And I was right there with you
as your breath became thin.
I cried there on the floor with you.
As you let it out, I took it in.


You see, my precious daughter,
my love for you is so pure
that I gladly use you in my plan
because I know how much you can endure.


My gifts to you are shown
through what you can share
of the triumphs and the trials
and the beauty that can come from despair.


Don’t ever be frightened, my love,
your days have been pre-ordained.
All good and bad, part of my plan
so that my Truth may be gained.