Running the Race

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Just like this guy, I’ve been running with what must be.. “my magic legs” because there’s no explanation as to how I’ve been able to just keep running for the past 4 1/2 years, after over a decade of running through some incredibly rough pregnancies and miscarriages just before that.  Mama’s tired, but God’s given me Forrest Gump magic legs to JUST KEEP RUNNING.

We’ve taken a few hits in the past few months making it a bit challenging to find a moment to sit and write.  But I’ll share what’s helped me put one foot in front of another these days after: recently removing/ radiating more brain tumors with the Gamma Knife Machine, driving the next day (Deja vu. Yes, same scenario as just a few months ago, again) to MD ANDERSON in Houston, TX.  Finding out there that we have new growth in the liver (dealt with this for past few years) and new small growth on lower spine (this is new).  Whew!

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Just when ya think you’ve got a good treatment plan, it often seems to change just after you’re settled in.  This is the life of most cancer patients.  I’m not unusual in that.  However, I’m well aware of the GRATITUDE I must give that, ALTHOUGH I’M NOT CURABLE (at this point in the research world), I’M STILL TREATABLE.  THAT IS DEFINITELY A BIG DEAL IN THE WORLD THAT MANY OF US ARE FIGHTING IN. I RECOGNIZE THAT, AND I’M TRULY THANKFUL.

What does that mean,  TREATABLE?

This means that I’m still in the race.  

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Naturally, when I was first diagnosed, I wanted to cross the finish line in record time.  I did everything that I saw on the “to do” list (chemo, surgeries, radiation). Check. Check. Checkity-Check!  Boom! Mic Drop.  Check my time, folks.  I was on fire!   Yet, this wasn’t a hardcore sprint, I was in a 100 mile run.   I was in a triathalon.   I was now a lifetime long distance runner, and the finish line was no longer the goal.  The path, the training, the run itself was my new focus.  I’m now just grateful to be in the race at all.    Interesting how God allows us to see things differently as we evolve and life takes a few “plot twists” along the way.

Although, I find, I only really see it, when I allow myself to see it.   My real falls and trips occur when my eyes are searching too far ahead, trying to see where every possible turn is and I don’t pay a lick of attention to my footing, or my God who’s carrying me really (It’s so often him that’s carrying me when I’m too tired to even put my shoes on).

      I find myself trying to control the race, direct myself, my family, and my docs to navigate the situation…micro-managing God in my prayers and conversations with Him, as if He doesn’t know what’s going on.   He knows.  He always has, He’s been prepared for this as long as I’ve existed.  It was me that wasn’t ready to know before.  Now, I’m ready.  Why?  Because NOW He’s giving me all the graces I need for what I have to do now.  I couldn’t do this before, because I didn’t have the grace for it yet. attachment_560align=”aligncenter”width=”625″]img_8955 (5 timers club SNL) At my 5th “Chemo School, I asked for my 5 timers club blazer. But apparently they don’t do that sort of thing. But it was good for a laugh. Seriously?!?[/caption]

Broken record here, but If you’d told me when I was younger that I would have 5 kids and cancer 5 times over I would’ve passed out and thrown up all at once!  …  I wasn’t ready.  Who is?

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Just like the doc’s office wasn’t ready for my 5 timers blazer, … I didn’t have the grace yet for all that info early on! 😉

At one kid, I didn’t have the grace for 2.  With 2 kids, I couldn’t imagine 3.  Didn’t have the graces yet.  And clearly, I didn’t have the grace to run this race of 5 kids and cancer over and over again for 4 1/2 years with my 5th new chemo plan!   But… (you guessed it) I didn’t have the grace for that.  I know he’s giving me those graces because I just don’t make sense otherwise.  I’m not brave or strong, or courageous.  I’m just putting one foot in front of the other.  Whether I run this thing or walk it.  I know that the only way I’m still in it, and the only way that I’ll get disqualified is if I give up.

We all have reason to live.  We all have reason to CHOOSE HOPE.  Not because we FEEL HAPPY AND HOPEFUL, but because we choose to place our thoughts and prayers there and cast away the thoughts of despair and doubt, shutting and refusing to open the doors that beg you to open them and mill around for a while in self-pity and anxiety (whether it’s a medical crisis, emotional issue, or just plain funky day).  All of these crosses are our crosses (no how big or small they may seem). It’s up to us to call on God to give us the grace to pick them up.  We have to ask for those graces that He has ready for us, since He knows us and all the details of our situations (and our families and their needs).  No need to micro-manage the BIG GUY!   But, we have to LET HIM and not fear the way in which He’ll do it.

A friend and fellow fighter/survivor recently reminded me of a reflection in “Jesus Calling: Daily Devotional” by Sarah Young.   Shannon called me as I was driving and said, “Elise,  we’ve got to remember to GLANCE at the problem, but GAZE at Jesus!” 

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Can’t get enough of this image.  He always shows up.

That’s it!  While going back and forth between home and MD Anderson, I’ve been loving the idea of expanding our team and hearing about new trails being offered to be considered as part of new trials, discussing the options of trials vs. new medications approved for my diagnosis.  However,  it can get very overwhelming and confusing.   It’s hard to not get distracted in these appointments and distracted by the new methods of treatments and options that can sound unusual, or scary even.   That’s when I know that my gaze is surely fixated on the problem and how to manage it and juggle life in general.  I feel the pressure and weight of the world … aaaaaaand the schedule of my family, trips that we want to take, bills that will be coming, etc. and it can get hard to even breathe.  GASP!

Then, just like that! I close my eyes, take a deep breath (breathing in the Holy Spirit and whispering “JESUS!” wherever I am), and there I see this image pictured above in my mind. I feel him pull me out.  It seems much like when Peter was walking on water, looked away from HIM, and began to drown.  Yet, this image above became real.    HE shows up.  God shows up so often in my life, reminding me exactly of what my dear friend Shannon brought to my attention.

GLANCE AT THE PROBLEM.  GAZE AT JESUS. 

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With that, I will leave you with this as I go check my front porch for my new chemo that was just delivered.  Yup. Now, instead of going to the infusion center every 3 weeks,  I will take 2 oral medications (1- an oral chemo therapy, no hair loss predicted. Yay! 2- a targeted therapy drug that is specific to my form of Stage 4 metastatic HER2+ Breast Cancer in the body and Central Nervous System. I’ll take these pills throughout the month from now until it stops working. No definite end set.  We’re looking for a current and a long term solution here, and this is very promising.  We’ve conferred with my expanded team now, between multiple docs at MD ANDERSON and my faithful oncologist and radiologist here who are all in full agreement that we will follow up throughout the process with scans to watch my progress and adjust as needed.    I pray my medications are effective and that the side effects allow me to tolerate it well and stay the course. I ask that you pray the same.

GOD’S GOT THIS!

I am in excellent hands both medically and spiritually.  I remain in the race and not giving up trying. I won’t give up seeking every way possible to keep me in it and running.  I still sung my Marley “every little thing’s gonna be alright”, because it will. No matter what the answer is. It’s alright. No fear. No worries. God’s got us all.

Even if God were to tell me, like Forrest Gump, “I think I’ll Go Home now”… that wouldn’t be a disqualification from the race.  If anyone runs without giving up, giving it all they’ve got, giving thanks for every day they’ve got and living their best life, no matter the storm… there are no disqualifications.  You can’t be disqualified for trying. There are only saints and angels cheering us on.  Some of these angels live among us now – in our families and friends praying for us and helping (if we let them.  We gotta let them.  It takes a village!).

Others are in perfect strangers, allowing you to pay it forward to those you may not even know with a simple smile, or a prayer for someone on the side of the road or an ambulance that goes by.   However our race looks,  we’re all in it.  We’re all running.  As long as we can remain with a thankful heart, taking our days as they come, grateful that they come… no one is gonna kick us out of the race.  The race is ours.

I’m gonna keep running mine.  May be by baby steps, one day at a time, but I’m doing it.

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As always, thank you for being in the race with me.  Couldn’t do this without your prayers and support.  Like really really! 😉

#EveryLittleThingsGonnaBeAlright

#TeamBuna

#BunasHope

#ChooseHOPE

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every little thing is gonna be alright

UNPREDICTABLE

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Not to alarm anyone with that pic, but nothing’s exactly, going wrong right now. However, we’ve hit a few bumps on the road. 

We’ve heard and made a variety of decisions, come back to them, scrapped them, and made new ones all in a span of just a few weeks.  All in all, the end result has kept my treament just as it was in the beginning.  We’ve made plans to move forward with my current treatment; gotten great scans;  gotten the word to finish 2 more rounds of infusions and be done; learned just after that exciting news that the real hopeful news we were looking for (a successful long term maintenance plan) was actually that my current infusion (meaning that I shouldn’t stop after 2 more rounds as we’d just celebrated, but, at this point, “stay on it until it stops working” (no time line to put a finger on). Whew!  We’ve expanded our team, and that puts more heads in the mix, but has also confirmed the genius of my original and current head oncologist, Dr.Saux (the pirate docta) who’s latest treatment is a good one.

Did I mention that within the 2 weeks that I received all of that information, I received chemo on a Monday, had a Gamma knife procedure that Wednesday, flew to MD Anderson on Thursday, flew back the following Monday, and drove straight to the theater so I could continue choreographing the play, Godspell, that I’ve been working on, as I have been for years upon years my second home since 1987.  Through this I couldn’t let go of my passion to work on the dancer and ensemble movement as well as continue as costume designer.  I’m not one to toot my horn.  But there, I said it!

Sidenote: I’m pretty sure I’m  just now making up for the time my husband and I first officially met, training for a marathon, although he never trained yet I did.(Ya know, those 17mile Saturdays? Yeah. I did them alone in college on Ohio hills, yet he just ran the dang marathon because he’s Zeus or something!  For medical reasons, Docs wouldn’t let me run the actual marathon, yet he ran it like a champ and gets to tell everyone about it. But my months of training are jack squat because… no marathon. Nobody cares about my stinking training they just care that he ran a marathon, in HAWAII no less.  So here’s my telling you the “miles I ran” this month! #ducktapemymouthplease #myhusbandisabeastandiamclearlyjustjealous #ievenraisedthemoneyforhim #prettysureheowesmeatriptoHawaii

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UPDATE?

We’ve had good scans, confusing scans, and even a recent spinal tap to ensure that none of those nasty brain tumors’ cells  (remaining 11 brain tumors were removed by Gamma Knife/ non-invasive, non-surgical  radiation).  However, a spinal MRI at MD Anderson concerned our now expanded team of spots that “might” be cancer cells crossing over from the brain.  ….  2 weeks later,  GOOD NEWS!  Spinal fluid was ALL CLEAR!!!! God is good!!! All the time.  Check that off the list.  Whew!

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However, like I said, all of these ups and downs, running to MD Anderson and back, making plans to revisit again, and now… indefinitely continuing this targeted therapy infusion every 3 weeks?  It kind of threw my plans off a bit.  To say the least.  In fact,  the past 4 years of all this mess has thrown my plans off from how I thought I would be living life. FIXIG MY HAIR, playing with my 4 year old,  being present more often with my kids in general, spending time with my husband? You name it!  We had many plans for trips this summer that we are desperately trying to rearrange constantly for the change ups that pop up whether for new or already scheduled treatments or for my cruddy immune system that just is, well… unpredictable! 

I had thoughts last summer of getting it all together, signing up for things at school, and being so on top of my game.  I was ready!  But instead, I sign up with a big (“hopefully”/”I’m pretty sure I can”) next to my name, and more often have to cancel last minute because my blood counts dropped, I needed fluids, or some other wierd thing I’ve never heard of before that’s apparently common in the “cancer world”.  I’ve never heard myself say “Sorry!” so much in my life.  I feel like Gilly from SNL!

(In case you have no idea what I’m talking about, here’s a clip below.  Ya may find the character and sketch a little odd, I know, but It’s all that runs through my head when I’m apologizing and cancelling/rescheduling/ rearranging our plans).

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GILLY (Kristing Wiig) AT THE SCIENCE FAIR / SNL

I know, I know. It’s just life.  I get that.  It’s a part of learning that we don’t have control of our life.  The sooner that we learn that we don’t need to have control, and let go and follow God’s lead more often, the better off we’ll be.  Doesn’t mean it’s easy.

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How do I handle that?

Some days, I wake up ready to grab my calendar and start figuring out what we can and can’t do and plug away at the dates that I can plan.  (Always knowing that anything can change, but at least have something in mind to seize those moments when they come.)

Other days…  I can only look at the present week, and I tell my family to please not ask me to discuss anything further.  If there’s something that they need me to know about for later in the month to write it down on my fridge calendar or put a note on my office desk, but DO NOT discuss it with me now.  I just can’t handle that today.  I can only manage THIS WEEK.

Lately, more often I can only handle the current day.  If you ask me about anything in the future, I feel totally blind sided, overwhelmed and I get all freaked out like a wierdo.  Mostly by merit of the fact that I’ve been so dang busy these past few months, had major ups and downs in major life decisions and results that could’ve entirely changed my actual LIFE as it stands.  Not to mention, in the mean time I had to cancel and am still having a hard time rescheduling things that are very important to me,but stuff like “Mommy’s cancer” for the 4th year now, continues to “get in the way”.  Sometimes we just laugh about it, makes it feel better to laugh.  My favorite medicine, of course! But sometimes, its just so real that I feel the world is spinning so fast that I can feel it, see it, and am knocked over by it.  When I know someone’s coming up to ask a question about something I just can’t answer,  I search in my pocket for Frodo’s ring hoping to put it on and become invisible for just a moment! Oh the joy!  Just sometimes?

Nevertheless, this overwhelming state of being forced to live ONE DAY AT AT TIME, is a gift that God knew I needed.  We ALL DO. To live in the present is a gift. It’s intended to be.

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It’s a double edged sword.  It hurts to feel like you have an “unpredictable stamp” on your forehead.  Yet,  knowing that I can hardly know the plans for my future week, month, summer,  is probably what God’s asking of me.  A challenge with 5 children of course.  But a challenge that I needed to accept all the more when I  accepted the life of a big family..  A life that also was already filled with such unpredictability that is probably what prepared me to be able to switch gears when necessary and persevere whatever the new course is. That’s been my life as I’ve known it for most of my life.  Even before becoming a mother.  Just as life had its ups and downs within our family growing up.  I’m sure you can relate.

So we live in the present. Like it or not. One day at a time.  One minute at time.  Just as we were intended to. That’s probably why our desire for and struggle for control is equally as stressful as letting go of it.  We weren’t meant to control, but rather to surrender to the one who loved us first and loves us most.

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The most amazing part in this most difficult task of surrender, I find. And trust me, saying and doing it are two entirely different things. I’ll be the first to admit.  I can give it all to God and take it right back within the same moment in my own inability of what exactly He would do with it if I gave it to him? But then I remember who He is. How could I claim to possibly do this any better?

I make myself repeatedly tell God, every morning

I surrender my body.

I surrender my family. 

I surrender my husband. 

I surrender my children 

I surrender my control. 

I give my life to you. 

I trust in you.

AMEN.

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That prayer has gotten me through every day for nearly 4 1/2 years now.  I should’ve started it many years before then.  It shouldn’t have taken cancer for me to say those words.  And, because I will always hold on to HOPE, WHEN I am healed of this nasty disease, I will continue this prayer.  Because knowing that someone bigger than me, wiser, and who knew me first, loves me most, and wants more for me and my family than I can ever imagine is actually running this show and looking out for me…. any blink of fear fades away and my HOPE builds all the more.  Hope that my children will be safe.  Hope that husband will stay strong.  Hope that ..

“every little thing is gonna be alright!”

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It’s a roller coaster with lots of ups and downs, twists and turns, but although I may have moments of screaming at the top of my lungs,  I also find many points to throw my hands up and smile, laugh, look at all that’s around me,  and enjoy the ride.  I HOPE to teach my kids the same.  I think we’ve gotten a good start.

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You never know what’s coming around the corner, it’s unpredictable, but it’s the ride we’re on. There’s no giving up and getting off, just holding on together and riding  it together… all the way through.

I haven’t mastered any of this.  I don’t claim to. Like I said, it’s just ONE DAY AT A TIME.

Thank you for your support.

Thank you to all those who’ve sent meals.

Thank you to all those who have and who are currently helping with fundraisers.

Thank you for the emails, texts, cards, and many messages and notes of your love, prayers, and concern.

Our family is so eternally grateful! 

YOU ARE GOD’S HANDS AND FEET when we could be drowning.

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Whenever I feel the undertow, His hand is there to pull me back ashore, often through the prayers and works of those around me. He is everywhere.

God bless you all and thank you for being a part of our Team.

#ItTakesAVillage

#BunasHope

#GonnaBeAlright

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For info on HOW YOU CAN HELP US TO KEEP PAYING IT FORWARD and help FAMILIES IN CRISIS, click on the button/link below for our non-profit, BUNA’s HOPE.

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You’ll find all the info you need to donate funds or send items for our care packages (BUNA BOXES).  We welcome you to look at the info for sending us details about families in need so that we can get a BUNA BOX and send them a box of joy and HOPE for their family!