10 May 2013

Lifting Weights

I don't want to bound or limited by my diagnosis of brain cancer.  I don't want to make major decisions based on whether or not the remaining tumor could cause another life altering seizure or worse.  I want to trust that my God has amazing plans for me and my family.  I want to raise awareness and see more compassion, funding, and sensitivity toward people just like me.  I've had people question if I really did endure 18 months of chemo... Lots of ignorant statements like, "But you still have your hair" and "everyone that does chemo has their hair fall out" and "you don't act like you have cancer".  Really?  Have cancer patients really been placed into such a small box.  Why do I feel like the powers that be built that box.  Sometimes I find myself jealous of the fact that on any given day you can walk into target and purchase a pink ribbon tshirt. 

The more I review my blog post in my head I feel like I should clarify some of my thoughts. Yes, I actually do spend time reviewing my thoughts, words, and writings each day as I'm trying to go to sleep.  I've always had an amazing memory for being able to quote what I've read word for word even days later.  I can't do that any more, but I can remember most of what I write and I do judge myself rather harshly sometimes.  This time I am relived to be clarifying myself. 

I am so very thankful that breast cancer awareness is everywhere. When a cure is found thanks to all the funding and research I pray that some of that knowledge will translate to other cancers like leukemia that took my grandmother or pancreatic cancer that took a friend and especially pediatric cancers that take too many dear children way too early. I lost a dear friend to that terrible disease of breast cancer and I pray for her 3 daughters all of the time. I have two shirts that I bought because of her that I wear from time to time to be reminded that life is short and she made the most of it. I also have a close friend that was a bridesmaid in my wedding that lost her daddy to breast cancer. And even today as I type this I have an aunt and a great aunt on my dad's side of the family that are fighting breast cancer and yet another encourager in my life that is currently in remission from this horrible beast. David has a t-shirt that says "Save Second Base" that he wears all the time just to watch teenage boys react. We bought that in support of a friend walking in the SGK 3 Day probably 10 years ago before that disease had ever even touched our friends or our family.

All of that to say, if I'm still being honest, I feel guilty admitting these feelings of jealousy and fear that more awareness and funding is not being put into brain cancer. Brain cancer is a terrifying illness that most patients would just like to survive long enough to die from something else (especially me... I don't want my mind to go before my body because I don't want my family to have to endure that!). Did you know that this year alone 70,000 people in the U.S. are expected to be diagnosed with a brain tumor? There are already over 120 different types of brain tumors identified. Right now only 32% of brain cancer patients make is past the 5 year mark from diagnosis. And sadly or maybe thankfully, due to lack of funding, brain tumor "facts" will change as more funds are raised and more is learned.

With that all said, May is Brain Cancer Awareness Month.  Please help me make the Grey Awareness Ribbon more recognized!  This is my current facebook cover photo.

While I'm talking decision making that has to revolve around my cancerous tumor I will tell you that David and I would really love to visit Haiti with my church on a mission trip in October.  We need to make the final decision very soon so that we can pay money toward the trip.  My next MRI is next Tuesday, May 14.  We meet with my oncologist later that day for the results (please read my last few blog posts).  More to come on why Haiti very soon.  James' is planning to collect Spoons for Haiti from his friends for his 6th birthday party and we are excited to see our little boy make a big difference.

So, who wants to help me raise awareness for brain cancer AND help pay a few of my medical bills so that we can pay for the mission trip IF when we get the okay from my oncologist.  Thanks to my awesome friend Eric over at TheShirtPrinter we have a new grey ribbon design available to print!  The best part is that you have lots of choices and all prices are a suggested minimum donation!

$20 - Regular Gildan Brand Tshirt in just about any color you would think to reguest (Kirstyn picked bright orange)

$23 - Dry Fit Heather Women's fit (I'm wearing a red one) or Men's Fit - these are 100% poly so have a silky feel and make a great work out tshirt!  There is a bit of a sheer to them too.

$12 - Just in need of a great draw string gym bag in a variety of colors.... we have that option too!  I can't wait to get my hands on one for me to use every single day.

Please email me, message me on facebook, or text me with your order and we can discuss money details.  I can even take paypal donations.  To save on printing costs we want to try and only do one run so I want to keep orders open for a couple of weeks. 

This design really means lots to me and I hope it inspires you too.  Who knows, maybe someone will ask you what the grey ribbon stands for and you can be the one that raises brain cancer awareness!

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10


27 February 2013


Well, I have to say that timing is everything and with God it is Perfect.  At church our pastor has been preaching a series on Fear.  I've learned that there are two kinds of fear.  One kind of fear is described as Awe or Reverence.  The other kind of fear is one of apprehension, doubt, and dread.    During this study the verse Isaiah 41:10 has been used several times.  "So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."  I just keep thinking that I need to design a shirt to wear to the gym that says something like 'My God Lifts Weights' and reference that verse and put a barbell on there too.  Anyone else want one too if I design it and get my awesome friend at TheShirtPrinter to make it real?!?!

Anyway, yesterday was my Baseline MRI that I talked about in my last blog.  This morning we went to visit with my oncologist about all the details of "what's next".  I would be lying if I told you that I wasn't anxious about the results of the scan and about the unknown.  No matter the results or my oncologist's planning, the bottom line really is that I have to learn to trust the unknown to a known God.

Yesterday, right after my scan a friend sent me a text with her devotional from 'Jesus Calling' by Sarah Young and it was perfect for me to hear!
I am leading you, step by step, through your life.  Hold My hand in trusting dependence, letting Me guide you through this day.  Your future looks uncertain and feels flimsy -- even precarious.  That is how it should be.  Secret things belong to the Lord, and future things are secret things.  When you try to figure out the future, you are grasping at things that are Mine.  This, like all forms of worry, is an act of rebellion:  doubting My promises to care for you. 
Whenever you find yourself worrying about the future, repent and return to Me.  I will show you the next step forward and the one after that, and the one after that.  Relax and enjoy the journey in My Presence, trusting Me to open up the way before you as you go.
So, the question I am having to learn to ask myself daily is will I choose one of the natural responses of fight, flight, or freeze OR will I choose a Supernatural response based on Faith?  Honestly, I think the answer is all of the above.  I have been fighting with everything I have since my diagnosis.  They put chemo wafers in my brain during my surgery in June 2011, I then accepted the challenge of 6 weeks straight of chemo and radiation.  Then, 3 weeks later I agreed to a new chemo regimen where we quadrupled my chemo dose and I have taken that dose 5 days every 28 days for the past 18 months! 

Simply, based on today's oncologist visit.  My tumor is under control for now and has even shrunk some since the start of chemo 18 months ago.  Now the biggest challenge I am faced with is the eliminating of all of the drugs that I take regularly that are no longer a necessity now that I don't have to be on chemo. My favorite news is that I don't have to make weekly blood work appointments anymore.  So, bye bye to all of my nausea drugs, sleep aids, and pain medications.  The chemo that I have been taking basically since June 2011 listed the following as the first four major side effects:  nausea, back pain, weight gain, and sleeplessness.  Trust me when I say that there is a reason why many people have to attend an inpatient rehab facility to come off of some of these drugs!  I have been cutting back the past few months very slowly and I have still had some crazy dreams, night sweats, and major mood swings.  This will not be easy but I know how to cut back slowly and I have a detailed plan.  I will continue to take the massive doses of seizure medication (probably for the rest of my life).  That one causes drowsiness so I won't be giving up my coffee or spark any time soon!!!

I really want to drop some of this weight that I gained while in the hospital and at the beginning of this cancer mess when I was having to take massive doses of steroids.  Getting off of many of these drugs will help that process but I really do need some sleep...good sleep in order to make this weening process easier on my body and my mind!

Now, I really have to let go of this fight.  I'm such a planner and in spite of how incredibly hard all of this has been on me physically and mentally, I can honestly say that my faith has matured.  I would be lying if I said that fear is not a factor since now that my 'fight cancer' plan is more of a 'wait and see' what happens next with the tumor waiting game while continuing normal day to day activity in our home.  Nothing for me to power through except my own thoughts and even then I need to turn that conversation with myself into a conversation with Him.  Please be praying that I will continue to choose faith in spite of my natural responses!  "... we know that suffering produces perseverance, perseverance, character; and character, hope."  Rom 5:3-4


29 January 2013

Not Cool Robert Frost

So yesterday I had an oncologist visit.  Then yesterday afternoon I was in a processing, thinking, stressed, frustrated, trying not to cry in front of my kids kind of mood (you know what I mean, right?!?!)  Well, anyway, I was just trying to focus on something, anything other than my situation and so I checked facebook and several of my friends had posted this video saying "watch this if you need a pep talk!"  So, go ahead, watch it!  http://www.youtube.com/watch?v=l-gQLqv9f4o  It is too cute and my favorite part is at the very end where he dedicates his video to his friend Gabbi that is "Fighting Cancer like a BOSS!"  I love it.  If you didn't watch his video then you won't get the title of this blog either!  So, go watch, I'll wait...

Anyway, back to that oncologist visit.  I know this isn't new news but for some reason it just hit me yesterday... HARD. 

First, I went to my appointment alone.  I know I know, I have lots of people that would go with me, but it wasn't an MRI appointment.  Just blood work (and I do that every single Monday so that's routine for me) and a visit with the doctor about my month and what's the plan for next month.  Oh and what I call sobriety testing... really they are checking on my brain and reflexes but if you were looking through the window while I walk up and down the hall and touch my nose and repeat a list of words (yesterday's were: frog, bicycle, and apple) and spell words like train forward and backward then you would be wondering if they were checking to see if I had enjoyed too much fermented fruit for breakfast!

Then we went over the plan.  Start my 18th and LAST (for now) round of Chemo on Monday (Feb 4).  Then schedule an MRI with Profusion (the long one hour, 2 hours from start to finish MRI) for our new Baseline.  Um, okay... that's when I started asking more questions (questions David and my sister Neida had asked 18 months ago and I listened but hadn't really heard).  New Baseline.  *sinking in*... So can we expect it to shrink or die anymore or lessen blood flow to the cancer any more.  NO.  Right now we are believing that the Chemo and radiation has done all it can to fight my cancer and continuing it right now puts me under too many new risks (like building a resistance to chemo and putting me at risk for other cancers... fabulous).  So I said, ok, baseline for what...  Finally she put it in Direct easy for Natalie to understand terms.  "We have to have a baseline because the tumor WILL grow and come back, we just don't know when.  This will allow us to closely monitor it so that we will know what we are dealing with WHEN that happens."  (To be clear for those of you that just decided to panic for me... this could be in 3 months, 3 years, or prayerfully 30 years.  Either way, LOTS more awareness and funding and research needs to be directed toward Brain Cancer!)  And starting out I will be getting an MRI every three months and then eventually stretching it out for longer periods of time as long as no new symptoms appear.  I will stay on my massive doses of seizure medicine since much of the tumor is still in there pressing on important parts of my brain.

Okay, so there I am, proven to be sober and with a pretty cooperative brain and face to face with my reality.  Time to do the blood work and schedule my Baseline MRI and next appointment.  Well scheduling was a nightmare... everything was booked so we are having to split my MRI and oncologist visit over two days.  MRI Feb 26 and Oncologist Feb 27 (David will go with me for both some way some how even with the end of the month being his busiest in car sales and we will work out childcare/taxi services for Kirstyn and James).  While Marsha and Betty (my oncologists' awesome front desk ladies) were on the phone trying to work out a MRI and appointment time for me, I picked up a book that a patient had left behind and started reading.  It's called "There's No Place Like HOPE.  A guide to beating cancer in mind-sized bites" by Vickie Girard.  (I'm currently looking for a copy for me so please message me if you see one... I wasn't able to find an ebook version.)  There are little quotes all in there divided into chapters.  The first one I read was about Nighttime (note: I'm exhausted because I never sleep good before a doc appt).  One of the quotes said, "I'm fighting so hard to live, why do I yearn so deeply for the sweet nothing of sleep?"  Another chapter was Well Meaning Comments... my sarcastic sense of humor was reading these and laughing out loud... I've thought so many of these while just smiling at well meaning people... one was something like:  We all die from something, I could walk outside right now and be hit by a car.  Uh huh, let's level the playing field and you put on a blindfold and stroll on the freeway and I'll take my cancer and cross the street.

Let's just say I needed to know that other people have thoughts like that.  Not that they are good but they are REAL.  I've done nothing but try to be real.  I'm still trying... and I have to agree with the kid in the video, Not Cool Robert Frost, Not Cool!

In other news I've worked out extra hard in the past two days (it's my preferred method of stress relief) and I'm going to be sore.  Today a friend shared a saying that I posted last summer...  I needed the reminder!

"Cast your cares on the Lord and he will sustain you; he will never let the righteous fall."  Psm 55:22

"So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."  Isaiah 41:10

(If you are reading... please comment so that I know who you are.  I know many of my friends visit here because of David and I on facebook, but I also know that there are several others that only use this blog to check on me.  If that is you, please comment so that I can be encouraged to keep posting.)


09 January 2013

Merry Christmas 2012 (at least it's not Easter yet!)

So when David and I got married, I really wanted to make sure that I took the time to write a Christmas update letter each and every year.  Guess I had a misconception that it wasn’t a big deal and I would be able to always follow through with my plan.  I know I wrote my last long update letter in 2008 and then in 2009, I put together a Christmas postcard with a brief update to save on postage.  But, in 2010 we made the difficult decision to sale our Farmers Insurance Agency to David’s mom and he was officially unemployed and looking for work in a tough economy.  And since postage, Christmas cards and a fun letter wasn’t a necessity I wallowed in my bad mood and opted out of one of my favorite Christmas traditions.  In January 2011, David started a new job at Sewell as a Service Manager with their Fort Worth Lexus Dealership and was really enjoying his new career.  In June 2011, I was diagnosed with a malignant brain cancer – Oligoastrocytoma.  Before even having time to process this devastating diagnosis, I began an aggressive treatment schedule of both radiation and chemo!  The seizures that I had in my sleep that required David to do CPR, and that ultimately lead to that terrifying cancer discovery, forced me to be without a driver’s license for 6 months.  Kirstyn had to attend before- and after-school daycare and James was able to continue to attend his private pre-school.  We had lots of amazing friends that stepped up and helped with transporting all 3 of us while David was working.  When the medical hold on my driving was lifted in mid December 2011, I had people to see, kids to entertain, and tons of errands to run, but no time (or the correct frame of mind) to sit down and write a Merry Christmas letter!  Oh – and in December of last year David transferred within Sewell to work as a Sales Associate at their new Fort Worth Infiniti dealership.

So, here I am at the end of 2012 (NOW, beginning of 2013!  Maybe I will get this out before I need to label it Happy Easter!).  I have a new appreciation of each and every day.  We are being more proactive in teaching our children that ‘stuff’ is not what is important and that life isn’t ever going to be fair, but we serve a God that loves us in spite of us.  I love quotes and I think the one that fits our family this year is by the character Thomas Hunter in Ted Dekker’s Circle Trilogy, “Most men and women will yield to the seas of ruin.  Only the strongest in mind and spirit will swim against that current.”  We are trying very hard to make that a practical and daily process.  For Christmas this year our kids asked us to participate with our church in making an eternal impact in Haiti.  We are sponsoring a 7 year old boy named Woodley through New Missions.  We have his picture on our mantle and we are praying that he will grow into a man of God that will one day be a leader in the Church that our home church is partnering to build in the coming years.

For James’ 5th Birthday in May he asked all of his friends to not bring him presents but to instead bring hats for him to donate to kids with cancer.  Since he rarely takes off his own hat, he thought it was a great idea to make sure all kids, especially ones that might loose their hair, have a special hat!  We also spent much time in the spring praying about whether or not to do another year of pre-k classes or allow him to start kindergarten as one of the youngest in his class.  We decided it would be best for all of us if he returned to his pre-k at Fielder Road Baptist Church.  We did decide to switch him from 2 days a week to their 3 day per week program so he could go more, and that schedule worked better with my monthly oncologist visits and weekly blood work appointments.  He has really grown and matured this year.  He is starting to read and is so very curious about everything.  His absolute favorite thing to do is play Mario games and read Nintendo magazines and websites to learn about more secrets in the Mario games.  I am constantly amazed by how fast he memorizes the tiny details in each game he masters.

Kirstyn began 3rd grade this fall.  She has fallen in love with Hula Hooping and can do some amazing tricks.  She also loves doing zumba and dancing and singing.  Sometimes she is able to combine all 4 of these activities into one!  She played volleyball through the YMCA this fall and really enjoyed it (great news since she is so tall and competitive… just have to work on the aggressive part a little.  Guess she will always be our princess.)  She also started taking piano lessons and has progressed like crazy.  Her teacher believes she is already ready to compete so we will be trying that out this spring.  For her 9th Birthday in November she asked her friends to come to her party and bring donations for the backpack food pantry at our church instead of presents.   This was her second year to donate to this ministry but this year we were able to go bigger by combining her party with her friend Thomas that is in both her class at school and church.  They collected 999 individual food items totaling over 260 pounds!  We made a short video testimonial for our Thanksgiving service at church that can be viewed here:  http://www.youtube.com/watch?v=bY38R2tFmdY

We stayed very busy this past summer.  In June, my mom and I took the kids on a road trip to TN to visit family.  We also went on our yearly vacation to Port Aransas where we spent a week with some of my dad’s family and mostly just relaxing and playing on the beach!  I was excited to get to actually swim in the ocean, something I look forward to every year!  (Vacation 2011, I still had staples in my skull and wasn’t allowed in the water.  Also, surgical staples can get very HOT in the summer Texas sun!)  The kids attended several day camps too.  Their favorite is Camp Thurman where they play outside and learn so much about Jesus.  Every afternoon they get in the car looking like the counselors dipped them in the lake and then drug them through the dirt all the way to the car but they are excited about scriptures they have learned, fears they have concurred, and friends they have made.

As far as my medical details go, I have had several stable MRI’s showing that the tumor that remains in my brain is not changing.  My most recent MRI was on Dec 31, 2012 so we ended the year with good news.  I will start Round 17 of Chemo pills on January 7th.  The current plan is to stop chemo after 18 rounds rather than the originally planned 24 rounds.  We don’t know all the details yet but we do know that we will continue to monitor my cancer with regular blood work and MRI’s and I will continue to take massive doses of seizure medication.  Most importantly we covet your continued prayers for all of us to be at peace with His will as we continue to make the most of each and every day that God allows us to have together. 

"Because she loves me," says the Lord, "I will rescue her; I will protect her, for she acknowledges my name. She will call on me, and I will answer her; I will be with her in trouble, I will deliver her and honor her. With long life I will satisfy her and show her my salvation." (Psalm 91:14-16 NIV)