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)