The Unfathomable: Third Time’s a Charm??? WITH CHRIST ALONE

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That being said,  the unfathomable happened.  No my guardian angel wasn’t really drunk, but I couldn’t help but chuckle at the thought to chuck a shoe at somebody for a minute.     Last weekend, I went to the ER for some intense migraines that I’ve been having pretty regularly (I’ve actually had them chronically since college, and chemo magically made them go away! Yay for a silver lining in the shock that my hormones took to chemo!  I’ll take it! ).  Anywho…,  these headaches were different, and my regular go to protocol of essential oils and occasional Aleve wasn’t doing the trick for my first choice of attack.  Even the “big guns” weren’t working in the medicine stash.  They were persistent little buggers.   So my good pal and pirate docta sent me to the ER and insisted on IV meds and and MRI of the ol’ head/brain.

(This may be a little long winded (surprise! surprise! But, easier to get it all out now, then repeat it over and over later.  One and done?)

Lo’ and behold!  My doc was there as I was wheeled out and followed me to my room to chat with me and my hubby.  He’s always graciously honest and blunt with us.  Which I appreciate.  I don’t like being sugar coated and sweet talked.  Give it to me straight.  And he did.  

DOC: “Tumors… lot of tumors all over your brain, Girl.  And looks like a few deep within.”  

ME: My jaw drops.  Believe it or not… I’m fairly speechless.  I merely manage to say… “That suuuuuuuucks.  For real??”  

JASON: Grabs rosary and starts in with prayer, silently, as he leans in for more details.  Always faithful. … *As my doc and I have joked, the hubby prays like a military man, I pray like a hippie.  The balance works just right for us! 

Laughing at my crude response, Dr.Saux nods and explains further:    Since the last clear scans in January,  my cancer markers have risen in my weekly blood work.  We’ve been keeping an eye on it, but there hasn’t been a significant enough jump to give enough  just concern and reason to attack my Central Nervous System if not necessary.  No need to apply side effects and battle the brain if not absolutely necessary. Everything else has looked good.  My other blood levels have appeared ok.   Although, my headaches have increased (thus the reason for my ER trip and his request for the MRI) and we proatively had a PET scan scheduled a few days later (This past Wednesday 9/13, to be exact).    Sometimes, it seems we just get dealt a crappy hand of cards.

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I sat dumbfounded for the rest of the night that we were there waiting for the rest of my treatment in the ER, meds to be picked up, and to go home and approach the ultimate difficulty in all of this… my kids.  How in the world would I tell my five children (ages 3-13 now. They were ages 7 mos to 10 years old when we got on this roller coaster) that their mommy had cancer for a third time.  I had just been told I would need “whole head radiation and would lose my hair…. for a third time”.  I can handle whatever they throw at me, but, Dear God, not my family?  What about them??  How can I look at their faces and tell them this?  How can I make those phone calls from the ER to my family members (my parents, my siblings, my closest friends… again??  I can’t bear to think what it must be like to be on their receiving end.  I can only imagine what the doctors must feel like when I know they are giving me all they’ve got over and over again.  I empathize with the world.  It’s my greatest and most hindering/exhausting trait!!!    Eventually,  I just resorted to copying and pasting a group text/ FB message and drafting leered to babysitters and friends! Which eventually turned into an email to the kids’ teachers once we’d told my children on Friday afternoon/evening 9/15, after a few days , after we’d gathered all of our knowledge from the doctor visits and scans, etc.    Patience is definitely a virtue that I struggle with.    But,  I knew it was best for me to be prepared to have as many answers as possible for the questions the kids would ask.  So we prayed and patiently waited.  God is always faithful with his grace during the hardest part of all hardships… the waiting game.  That honestly can be the hardest part of all of it.

During that time of waiting,  I geared for the battle.  The battle that God revealed to me:  I was being drafted for WAR … again.   You see, I’m in the ultimate WORLD WAR.  No World War was ever won in just one battle.  Many many battles were fought.  I had the  dream of winning my war with one battle.  For many, that is the case, but I cannot be completely lost or entirely shocked/confused if I encounter another battle in my war.  It’s par for the course of being a soldier.  And, although I’ve mentioned before that I would probably never be one to sign up for war, it turns out that when drafted,  I’m a damn good soldier.  You want me on the front lines.  When I fight my individual battles,  a village fights behind me (that’s you).  They hook me up with firewalls of prayers, grace, and the most sufficient army of God’s angels and His blessings that I could have never imagined!!!  I go in every time well armed!  So, although I want to curse and yell and ask why my guardian angel got so drunk and missed this one?!?! (Yes, Folks, I’ve had my sailor mouth episodes… which mostly occur in the shower in my own privacy) But… I know that God is not leaving me high and dry.  He has never let me down when in battle.   He always gives me just what I need … and more!

 

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So, I’m suiting up and I’m calling on the best.  And to answer many of your next questions, I’ve prayed about the decision as to whether or not to go out to MD Anderson or stay right here, and it’s been made very clear to me that we have a doc from MD Anderson that is looking at my case along with the docs here at Mary Bird Perkins.   I’ve specially requested and drove to Gonzales, La. to begin this ordeal seeing my original radiologist, Dr.Charles Woods, who is now the director for Radiology at Our Lady of the Lake Hospital – Mary Bird Perkins in Baton Rouge (less than an hour away), along with Dr.Jay Saux who remains as the head of my case as my main oncologist.  Can’t lose my pirate doctor and friend now!  We’ve also added Dr.Katherine Williams and Dr.Rainney  other specialists who have been helping me with further side effects which I’d struggled with over the past year from my treatments and which led me to some of our most recent conclusions that made it less of a shock.  I’ve just known I’ve been “off” for a while.  I’ve had a lot of reserve about my upcoming PET scans this week (FYI: PET scans came and went, BTW… and the cancer has NOT spread further in my body. It is localized for our focus and attack on my brain!!👊👊👊) over my just plain “not feeling well for a while.”  But I’m thankful to have a good team that is in the know of where I am and is ready to put the pedal to the medal.  I was fitted for my radiation / “spider man” mask on Tuesday, did a trial/dry run with X-rays in it on Wednesday, and began my first radiation (As of Friday, it’s 2 down, 8 to go) on Thursday 9/14.  To be honest, it really wasn’t that bad.  I could breathe, I could hold on to something to squeeze, and the actual radiation part was sooooo much shorter than I imagined.  This is doable.  With every appointment thus far and this quick whirlwind, I feel more and more assured that this is just another thing that I can do… and with some of my surgeries in the past,  this will be a cake walk.  It’s the most important walk yet, but one that is TOTALLY POSSIBLE.  WE CAN BEAT THIS!!!!!

To quote my youngest, “I’m RRRRRRREADY!!”

My life is on the line in a way that is stronger, greater, and more urgent than ever before.    Although I am a jokester, this is a big one.   They’ve been bluntly honest with me that they have the best of the best technology to treat this right here and we can beat this if I start NOW   No time to mess around with other trips, options, and trials.  But if I do not,  I could lose my life… and quickly.  Breathtaking words, but I get it.  And it actually makes my first step into this treatment feel that much more like a leap to jump all in and start this business.  No messin’ around.   However,  if you’ve been reading or kept up with me in the past, you know me.  And I will approach this with my same search for HOPE, FAITH,  JOY, AND GODLY MANNER IN ALL THAT WE SAY AND DO.  And if I laugh, it’s not because I’m naive but because laughter is about the best darn medicine that money can’t buy!!!

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So there you have it.

I have STAGE 4 METASTATIC BREAST CANCER IN THE BRAIN.  Yes, it’s still breast cancer. Those nasty little breast cancer cells have just metastasized themselves to my brain through my central nervous system that wasn’t protected through the blood barrier during chemotherapy.  Our mode of attack during chemo was to attack the tumors that were in my body.  That’s what we did. And we did it well.  Without just cause to attack my central nervous system and brain, there was no reason to do so and risk what I will deal with now I’ve been told that there are anywhere in the mid-thirties in terms of tumor count with 2-3 medium to large tumors located deep on my cerebellum.

 

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WHAT WILL WE DO NOW??

WHOLE BRAIN RADIATION: 10 rounds of radiation.  10 straight business days, Mon- Friday beginning on Thursday 9/14 (Just in time for me to celebrate the kick off to me kicking cancer’s butt that night at U2 JOSHUA TREE TOUR!  My all time favorite band, no doubt!!!)

 

  • BACK UP PLAN/GOOD POSSIBILITY:  My radiologist has access to the BEST technology in our country, and in the world!  It’s called the GAMMA KNIFE RADIATION MACHINE.  This allows us to have non-invasive brain surgery to “pick off any tumors left behind, or that have gone rogue and under our radar… like a a SNIPER! ”  BOOM!  MIC DROP!    Folks at MD ANDERSON even come to his hospital to gain access to this machine because it’s the only one of its kind in this area.  How blessed am I that I have, again, the best docs and technology right HERE at my finger tips??  We will keep the GAMMA KNIFE in my back pocket from here on out for any tumors that should try and pop ever in my future.  At the current moment, there are too many for this machine.  Much like my original breast cancer diagnosis that was like shattered glass in my brest and lymph nodes,  we had to do chemo first to shrink the tumors back and make them operable.  Same idea here.  The whole head radiation will allow us to take care of business as much as possible NOW for the whole head and treat what we can’t even see, vs. risking waiting on a trial treatment or surgically attacking so many places when I’m running out of time.

 

  • SHORT TERM Side Effects:   will be like chemo. Hair loss and unusually large amounts of fatigue.  Like sleeping 12 hours in a day for naps.  Wierd.  I’m not a napper.  I can’t imagine!  (They expect 12-14 hours of DAYTIME nap starting AFTER I finish radiation. But this will wear off within a few months out of treatment?

(insert good ol’ SNL- TOM HANKS/”MR.SHORT TERM MEMORY SKETCH…. this particular one is a family favorite quotable! My old jokes are my new reality!  Cry or laugh?  Laughing is better.  I’ll take laugh for $5,000!)

MR.SHORT TERM MEMORY = THE NEW ME!! OY!

Remember your sticky notes for me, folks!

(click LINK BELOW to watch skit… SOOOOO WORTH IT!!)

CLICK HERE FOR MR.SHORT TERM MEMORY SKETCH!

 

  • Oh how I long for someone to prescribe me with some kind of treatment plan that determines my side effect to be “unusually alert!” Ha! What a dream!  How would that be for a change?  First it was “Mommy Brain” (Come on, y’all, we’ve all got it!  or if you’re not a mommy, then simply “aging brain” Sheesh!)  Then, “chemo brain”,  now “radiation brain”?!?  And to think I already started with my plain ol’ scattered “Elise Brain” … I gotta admit,  I’m a little concerned.  They say the ol’ ginkgo biloba and all of my essential oils (which I will never give up on, in fact, I’ll be setting up a new “PATH TO WELLNESS tab” to show ya what I do and why I do it.  Where I get my fave non-toxic supplements, hair growth oils, make-up, and all that I have to keep me feeling like I’m doing my part not just keep ME protected, but to give me the confidence that I’m doing ALL THAT I CAN to protect my family. I want us ALL healthy!!!), will have nothing on this.  Just gotta stay active and learning.  Guess I’ll just have to keep on that dance floor and keep my brain moving’ and grooving’ with choreography and embarrassing-to-my-children dance moves!  That’ll help, right??

 

  • LONG TERM: Permanent short term memory loss.  So please, people.  Introduce yourselves when you see me.  I may recognize your faces, but It’s not my fault or yours, but they say my name recall amongst others will fade away.  I’m already bad with that,  but they said to expect a 50% drop.  Here we go!  Oy!   Teachers, I’m doing my best to keep it together w 5 kids already, please be patient with us🙏.

 

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LONG OF THE SHORT:  My LIFE IS AT STAKE.  If losing my hair AGAIN  to save my life is what it takes and having to bring some post it notes around to help me remember things will keep me on this earth a little longer to see my children grow up…. I’ll do it!!!!  

I’ll do anything.  I never thought that I’d make deals with God to just let me see each kid graduate and then discuss just letting me walk down the aisle for their weddings.  I pray to GOD to let me see those days.  But I know they are a long way a way. So, I start with their graduations.  (Mind you I never said  highschool or college!  Haha. I’ll let him decide.  I just want to see a flippin’ hat get chucked in the air! Mmmm’kay?!)

But they tell me that if I do this protocol… and  SOON,  my life can be saved. Every doctor has full confidence that we CAN do this.  It is totally possible.  We have the greatest technology right here!  And my radiologist, Dr. Woods (pictured below from our last radiation tour, next to pic of me and my oncologist, Dr.Saux below that, from my entire cancer fight)  is on the up and up with  technology that is unique to the WHOLE COUNTRY!

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Me and Dr.Woods

This man got me through my first experience of wit with his genius and quick witted mind.

Me and my friend and doctor, Dr.Jay Saux

This pirate docta has seen me through it all. I believe in him and he believes in me and my family.

Yet again, I’m living in the cream of the crop for my specific diagnosis.  How does this keep happening?  You guessed it… GOD knows what he’s doing! He doesn’t make these crappy things happen to us, but BOY does he provide what we need when we need it.  I can prove it. I will prove it!

 

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(My team remains: Dr.Saux- oncologist,  Dr.Woods radiologist, Dr.Williams and Dr.Rainney specialists on my side effects, and of course Dr.Sullivan who forever keeps an eye on my scar tissue and management of my original diagnosis and healing of my body through all of this.  These doctors have my heart, they have my family, and they have my life in their best interest.  I know  that I know that I know that God has put this team together and divinely orchestrated them together as our DIVINE PHYSICIAN.   “What God has put together, no man will put asunder”.  That’s how I feel about the peace of staying close to my team.  They include MD Anderson, yet we know that MDA has even said that we have better technology for my particular case right here in Louisiana, within miles from my home, at this point and for my future as we know it now.  My friends, I get to stay with my family right here!!!! Hallelujah!!!!! )

YOU are indeed part of my team and I am forever grateful to the community and the soldiers we have behind me.  Like in the above meme.   I can move confidently forward because I know I’m not alone because of all who are behind me.  It’s just another battle, and we’ve proven victorious in the fight.

LET’S DO THIS!!!!!

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*pic below of our prayer intentions during our “Holy High Five” to Jesus at the adoration chapel after telling the kids and before celebrating “Kicking Cancer’s Butt/LIFE” w ice cream and dessert!!!!  That’s how we roll

Not a whole lot more to say except than that, although this is such a quick roller coaster that we are already flying on and once again we’ve been drafted for another battle, that’s just it. We are finding another battle amongst a huge war and so far we are victorious in each battle👊🏆!

I could play the “why” game all day if I’m really willing to waste my days, hours, and worries on that. But it gets me nowhere. It just gets me angry and frustrated….  and lost.   Rather, when I think of it as just another battle in the my course and war, that although scary and one that I never signed up for, it seems as though I have the right army behind me, beside me, and before me, to prove our force to be one to be reckoned with!!!

We’ve got this, because God’s got this!!!

(Do yourself a favor and check out this song/link below… B/c, In CHRIST ALONE, I will live!!!)

*Special thanks to my brother, Fr.Beau Charbonnet for passing this one along to me!

He has never left me stranded, he has never left my family alone or without the love and care that we’ve needed. People have come through the woodworks and it is blown me away every time.  I could not be more grateful and it rocks my very soul to have to ask the same people to hear this song and dance all over again. That’s my biggest heart break.  I can handle whatever comes at me, but to break the story to all of you and be concerned that anyone out there struggling with a semi battle would lose hope because of me, rocked me to my core.  Never lose hope.  Hope is what I have.  Hope is what I live for.

I’ve been very hesitant to write this just because of my whole entire thinking, my nonprofit, and all that I do stems from the phrase “Buna’s Hope”!

And that nonprofit will not stop. Sending a  family on one of our “hope on a vacation getaways” (to Disney!  Another blog to come of their letters of gratitude and the true gift that we/YOU delivered to them in just the perfect timing moves me to tears)  or hope in  a simple care package (Our Buna Boxes) is something that I believe so strongly in. I’ve met such amazing families who we have been able to touch because YOU have reached out and helped us to touch them. I’ve heard their stories, I’ve gotten to know them, and I see the joy that Buna’s Hope just brought to their faces if only for a moment or if only for a time together for a week on a simple vacation.  We are determined to keep HOPE alive!!!  Please click on the “Buna’s Hope Project” tab see how you can get involved. Through donations or sticking our dates (TBA VERY SOON) on your calendars and bring the whole family for upcoming packing days (the idea is that we do this “by families for families” so please bring all ages to do this as a family!!!, while also rallying funds for trips to donate to our PayPal fund (also found on this same link/tab) to raise money for more vacation giveaways!!!    Nothing can stop us now. Everyone at the office is helping to rally the troops so that I can keep this going. It means more to me now than ever. Our family knows this struggle  all too well and first hand. It brings me great joy to create this legacy of HOPE for more families.  Whether their crisis is cancer or any other cross that’s rocked their world,  we can give them our love, hope, joy, and support in a simple box or even a trip. To know others are out there rooting for you is an amazing gift, people.  Help me to keep this legacy alive!

(Notice sample pics below of our supplies sent in by YOU, Buna boxes packed by family and friends (my kiddos pictured on summer days), and our BUNA’s HOPE logo that is applied to each and every box with a very special letter, “ingredients” description, and individual handmade cards that are thrown in with all the goodies for family day/night fun TOGETHER… away from the stress for a change.



On that note…

Please allow this to be my advance thank you!
Thank you for your prayer support.

Thank you for checking in on my kids and helping me to keep their schedules as normal as possible. Normalcy means so much to us with all these chaotic rides.  We mean no offense if we have a “no knock” sticker on the front door. Sometimes, mama’s resting, or sometimes, we just plain need to keep our train moving inside and talking to anyone outside of our crew and answering questions while we are in our home/safe haven just tends to throw us for a loop.  We’ve been here before.  We have seen what works and doesn’t work for our family.  Normalcy with outings for fun is important to us.  But we often keep our home as our quiet safe haven.  We have grown to be true “extroverted introverts”  And that’s ok.

 

Thank you for reading this blog and being mindful of my children surrounding me and even my extended family /nieces and nephews when so often when people ask me questions. Their little ears don’t need to hear me tell this story so often again and again, nor is it easy for famiky and friends to repeat it.  Therefore, I give lots of info on my blog so as to explain as much as I can and clear up as much I can ahead of time.  I hope and pray that this is useful.  

(Yet again, this is part of the reason why we keep our house as our little haven where we keep our routine and our afternoon schedule as normal as possible with the same people that my children are used to coming in and out of our regular schedule, doing homework and having their day flow the way it always has.  Any rift and what they’re used to reminds them that our life is not as it usually would be.  It sounds crazy, but we’ve been here all too many times and we know how easily something can get thrown off!! Thank you for “getting it”!)

 

*Might I add this bit of assurance that we plan to use when speaking with our children on Friday (9/15)…. Yes, I wrote this blog ahead of time in all of my preparations.  We’ve explained it in the past and we explain it to all again… Cancer is much like snowflakes.  Every diagnosis is so unique to each person.  No two patients are  “the same”.  So, rather than read my blog and lose hope or go down that path of fear of anyone else’s future…. or dare to compare.  Please know that this is just MY STORY.    This means nothing for YOU and what could happen to anyone else. I did nothing wrong,  it’s just my story.  I pray for all of you daily and I pray that my children can know the same peace to not compare me to anyone else that they know or have heard of.  I am a snowflake.  I am a unique and delicate snowflake, like no other.  We all are.   God created me, He knows me, and He will handle with according gentle care.  JESUS I TRUST IN YOU!!!

 

Now I’m on to my first radiation treatment with my new “spider man” mask bolted to my table in the MRI tunnel. But surprisingly (for those of you who’ve had loved ones go through it…. The “dry run” on Wednesday and making of my mask on Tuesday proved to not be anywhere near as alarming as I thought.  Just requested my “3 little birds” song and prayed and breathed my way through.  God is with me.   We can do this. 

Thank you for your thoughts and selflessness towards us.

Thank you , God, in advance for keeping me hear a little longer through your love and healing. I have faith in your love, care, and concern for our family as our Divine physician!

*Please accept this as my “thank you note”, as my life begins to spin around so fast and my memory and clear thinking gets very clearly and honestly under attack (like I needed more if that😬😳)!  With every gift and thought, as they are received, I have always chosen to stop immediately and I say a prayer for the person who has sent it as I know I just could never write all of the thank you notes that I would like to write.  Please know that when something is sent our way, your thank you comes in return as a prayer and graces and blessings towards your family.  I pray you can receive those blessings of my prayer as a better thank you note than I can ever write or call to say.  Call in those graces for whatever your joys or crosses, big or small my be in your day.  That is my gift back to you!  I had to swallow that tough humility pill during my last time around and, as a southern gal taught to act w etiquette and a good “thank you call or note”…. I just couldn’t do it all. So God give me the word to just stop and pray. I know that that’s what everyone truly wants for me anyway,  my rest, my health, and time for prayers and peace… so I just have to say aloud that that’s what I’m doing for you. That’s my gift in return. (Same kinda goes for my ability to respond quickly to texts, messages, voicemails, letters, and emails.  Please understand that I am probably receiving it all, but because of all that is going on it is just as overwhelming to respond, read, and go through it all as it is, at times, to follow my treatment plan and keep normalcy in my house.  My kids also can’t have their mommy on the phone/computer all the time.  They need ME.  I pray you understand that.  My family needs MOMMY now more than ever.  I know the helpless feeling of wanting to do more and wanting to help more or know that you’re thoughts and help has made an impact.  I’ve been on both ends of this story, yet when I ask for your prayers.  That’s not JUST PRAYERS.   Your prayers and mine in return or more than we could ever do for one another.  I truly believe that’s what has been the biggest winning game of each of my battles thus far.  Please don’t take that lightly.  M’kay??? 😉

God spoke that so clearly then and now as I face this battle. He is ready at my side. I feel his whisper in my ear.


We got this. And yes, I still request, at every scan and treatment to play my “3 Little Birds” by Bob Marley …. cuz:


PHILIPPIANS 4:6-7 “Cast your cares upon the Lord and He will give you a peace and grace that is beyond understanding.  

(It’s gonna be alright!  No more explanation needed.  IT’s beyond understanding, y’all!)

 

God bless you all. Thank you for everything in advance… again! My prayers and love are with you all always. Thanks for keeping us in yours!

*Just a few smiles  funnies to send you off with below!  Can’t help it! 😉 *

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Me on the last day of my original radiation treatment, ready to conquer the world!!! Feeling tired, but stronger than ever all the same!


*DISCLAIMER:  Before I get too scattered, I’m gonna go ahead and flood you with memes, pics, graphics, and more.  Fair warning.  But these were all just too good to pass up!!!!  Love you all, and hope this post, as detailed as it was answered questions,  comforted you as much as possible with the prayer and hope that we are coming to know …. AGAIN…,  while we also quite assuredly  know that I love you ALL and hope you always remember that with every prayer you send our way, we send them back to you TENFOLD (by name) with our prayer warrior little chirrens!   Again, my thank you note ability has become just too overwhelming, but I pray for every friend, family member, and prayerful supporter regularly.  Your thoughts and notes are returned with prayers and good works.  God bless you all!!!!

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See, I can do this boho bald look? Here I was on the cover of the 2014 MBP community report. We made it work.

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AS I WRITE THIS,  I’M HEADING TO GET DRESSED UP AND GEARED UP FOR…..

The most epic concert with my #1 band…. the U2 JOSHUA TREE TOUR IN THE SUPER DOME!!!!!!!  We will celebrate BIG with the beginning of my first treatment/initial step  to kicking cancer’s ASS!!!

U2 Joshua Tree Tour Clio

 

To quote my man, BONO”It’s a beautiful DAY”… I’m heading to familiar and unfamiliar roads all the same “WHERE THE STREETS HAVE NO NAME” (..”And if I go there… I’ll go there with YOU…. where the streets have no name!” … Well, Bono,  here we go to where the streets have no name   And I know everyone is still “Building me up! ”  

Just a few more fave songs of mine.  ‘Cuz theres always a silver lining, and ALWAYS ALWAYS ALWAYS, something to be thankful for!!  It’s still a “beautiful day”!!!

 

*P.S.  Went to the concert in NOLA, my all time fave band!!!!! Thanks to my bros for raising me right!! And more than ever, the song “ONE” really hit me and “LET IT GO”.  Because I know that we’re gonna get through this all together as ONE, we always have.  and I’m SURRENDING my body, my family, my children, and all that is dear to me and I’ve never wanted to lose control of… I’m giving to GOD, my DIVINE PHYSICIAN and having to LET IT GO.  That’s all I can do.     Take it, Lord.  I don’t want to be where the buck stops, so thank YOU for being bigger than little ol’ me and seeing more than I can see.  

AND THE HIGHLIGHT OF OUR STORM…. 

MY HUBBIE GOT ME CONCERTS WITH SOME OF MY FAVE PEOPLE TO THE CONCERT OF THE CENTURY… U2 JOSHUA TREE TOUR!!!!

(After a big “THAT SUUUUUUUUUCKS!!!!!!” in the ER, and having stomach flip all week of how the heck I’ll ever face my children,  I quickly popped up to Dr.Saux with, “I’m supposed to go see BONO on Thursday in NOLA, and fly to AUSTIN on Friday to get  a 3 little birds tattoo with my sister from another mister in Austin!”

Well, we had to botch the flight to Austin 😦 … she’ll come here.  The pic below is my tester/fake try on tat 😉     It’s a part of my life line now,  not just Marley, but PHILIPPIANS 4:6-7,  look it up if you haven’t caught on yet.  But, the concert was imperative.  Not just to me, but to my hubby and MY ONCOLOGIST WHO’S JUST CRAZY ENOUGH TO GET US SPECIAL “FRIENDS AND FAM” PASSES to bypass the crowds and find zoom across the lake to meet up with us, too!  He’s nuts,  I love him, and yet another reason why he’s the perfect doc for me.  He gets me.  He and Jason work well to get me where I need, when I need it.  And yes, U2 was a NEED this week.   I got to dance my booty off, sing at the top of my lungs and “LET IT GO!!!!”   Whew!  Nobody rocks like U2 in the Superdomeh!!

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Doctor’s orders… I was told in the ER that I had brain tumors and I said, that SUUUUUUCKS…. followed by, “I’m supposed to go to U2 on Thursday?!?!” He hooked me up and made it happen, special access to boot! #Mydoctaisthebomb

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With or Without You

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Doesn’t get cooler than these guys. They’ll never lose it

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Hours after my first whole head radiation and we’re celebrating! KICKING CANCER’S ASS…. IN A MAJOR WAY

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MY DOC ROCKS!!!!! #DOCTORSORDERSARETOMAKETHISCONCERTHAPPEN #WEMADEITHAPPEN #RADIATIONINTHEMORNINGU2ATNIGHT #BOOM


ONLY…. bc so many have asked (it’s painful for me to post this for myself…. but only bc my whole family is in the line….)
1) our Meal Train (thank you to my amazing long time friends and new business partners in health and wellness, Brooke Paulin & Molly Koenig)

http://www.takethemameal.com/meals.php?t=WIHC0245&v=a0e5a10782

And 

2) thank you to my beloved mentor, Angelle Albright, and dear friend, Kim  Hill:
Our family’s GoFundMe account:

Angelette Family Go Fund Me Link
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“What are you going to do with yourself now?” (umm… errr.. uuhhhh)

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On a regular basis, now that my youngest is in school three days a week,  and it seems to many that my cancer journey is behind me, what seems to come to most people’s mind to ask is,

“What are you going to do with yourself now?” (Normally asked with witty banter, winks and pats on my back before, during, and after, while I take a deep breath and reply….)

“EVERYTHING! All the things I haven’t done in the past 13 years of parenting.  I have a lot of laundry. ” (Insert more witty banter and laughter before I saunter off thinking of all the other things that are included on that list of my still HAVE TOs like monthly infusions, monthly injections, weekly blood draws and the never ending doc appointments (sometimes same docs, sometimes new specialists…),  normal mom-stuff like grocery shopping, cooking, and laundry… laundry… LAUNDRY, and seeking and carrying out new adventures in health and work opportunities to quench my thirst for taking care of my family.  My mind REELS with all of the things I want to do right now and all of the things that I haven’t done in so long as this is my first time in a long time that I haven’t been pregnant, nursing, have a toddler at home every day, or at WEEKLY chemo appointments vs. my current monthly maintenance infusion plan.    So many thoughts that sometimes,  I get nowhere.  And honestly,  I don’t know where to start first.  So, much like the image up top…. I HAVE NO IDEA WHAT I’M DOING… just yet, but

I’VE NEVER FELT SO INSPIRED IN MY LIFE TO LIVE MY LIFE TO ITS FULLEST, TAKE MY LIFE EACH DAY BY STORM, AND LIVE, LOVE, AND LAUGH AS MUCH AS I CAN EACH DAY.

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It occurred to me these past few months that I’ve been in some major grieving and mourning over my old life.  My old body.  My old hair.  My old schedule.  My old routines.  My old NON-MEDICATED, NON-DOC APPOINTMENT NEEDING (although, if I have to go to doc appointments, I happen to have the BEST EVER!!) , NON-SCAN NEEDING, NON-SCAN NEEDING, NON-DAILY HANDING ANY FEARS OF FUTURE RECURRENCES OF CANCER COMING BACK TO ME OR POPPING UP TO MY FAMILY OVER TO GOD EVERY. SINGLE.  MORNING.   ….,   MY OLD ACTIVE SELF THAT COULD DO SO MUCH SO EASILY AND NOT NEED TO FIGHT FOR EVERYTHING.

Honestly,  I’ve been having a pity party and didn’t even realize it.  It’s ok.  I think I’ve needed it.  I’ve been quite the gung-ho positive cheerleader for me, my family, and every one else in the world throughout most of my life, especially the past three years.  I’ve still been waking up each day and actively choosing to fight for every moment and opportunity to seize every day with my family, dance and laugh … and travel with friends and loved ones.  I make the most of everything, no matter how I feel.  Why?  Because… well… to answer the next question on most people’s minds (after the previously mentioned one above):

“You look like you’re sure feeling good.  Do you feel as great as you seem?!”  (asked with big smile and hopeful nodding for a thoroughly positive answer)

Sigh.  Another loaded question that I’ve tossed and turned many of my insomnia-filled nights to answer.  Seems simple.  And yes,  I’m boppin’ around with my kids at the pool, the beach, road tripping’ across the country,  at every school function,  dancing like a fool  and makin’ goofy videos just to lighten everybody’s mood on Facebook and with my husband on Staycations in NOLA.  But after a few very needed conversations this summer with new and old friends who are also “lifers” (a new term I heard for those of us with the indefinite schedule of maintenance infusions or what have you for a life-long disease),  it finally really sunk in.  I ‘ve said it before, but it really hit me.   I don’t have to FEEL GOOD to look and act joyful and seize my day.  Just because you see me on a dance floor or on a beach with a big fat smile on my face, it’s not necessarily because I FEEL oh so good.  Rather, it’s because that activity MAKES me happy.  Being there, doing whatever the crazy thing is that I’m doing, or being with the people I’m with MAKES me FEEL GOOD.

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I could sit on my couch all day and assess all the parts of my body that don’t feel the same anymore, and may never feel quite the same again.  I will surely do EVERYTHING IN MY POWER to find my healthiest self again and to stay active.  However,  no matter how I feel,  I have to look at each day like I did with each part of my treatment and ask myself a few questions:

  • What’s my treatment plan for ME today?
  • What do I want more than anything today?
  • What do I want to fight for today?
  • Is that going to be worth it at the end of the day to have gotten out there and seized it?

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The truth is, I have NO DESIRE to every have to go through all the aggressive chemo treatments, radiation, and surgeries again,  but when I was… I had a plan.  It was like I had been drafted for a war to be soldier when I’d never asked to be in it.   But, it turned out that I was a damn good fighter.  I happen to be the soldier you’d want on the front lines.   It’s odd for me to say something so confidently about myself.  But,  when I’m fighting like that,  I found a strength inside me that I had never known before.  I found a confidence, a freedom, and a trust in GOD that I had never been able to surrender to before.  I felt unstoppable.  When I was sent home from my war to my current battlefield with my “maintenance plan” that now currently keeps a busy schedule but doesn’t have nearly the same daunting fighting needs as before… I have felt a little lost.  I’m like a soldier, but not really.  I’m doing boot camp over and over again on an army base but not at war, even though I’ve been to war twice, and although I hate being there…. it’s all I really know how to do now.  It’s what I feel best at.  So weird.

When they slapped that big “FOREVER” stamp on my file and said I’d never get remission,  but told me that it’s ok.  I gotta be so grateful because this allows me to live my normal life, just with “invisible cancer” (such a weird phrase) that we keep at bay with my monthly infusions and injections to help prevent my high possibility of another recurrence after having stage 4 metastatic breast cancer.  Ummmmm… that doesn’t sound normal?

Thus began my pity party.   But as I’ve been so surrounded and immersed in this cancer world,  I see how grateful I am to have this life long plan.  I am a LIFER.  Key word being LIFE.  They’ve given me an option to stay in my fight.  And now an opportunity to take back my life as I’ve come to know it now and seek new adventures in health, work, my new schedule with no kids at home a few days a week, and all the things I  haven’t done in so long.

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So, I may not know exactly what my TREATMENT plan is for my whole life.  They  say forever, but that’s really all relative.  Because they don’t know about the dude that I’m praying for.  I keep my HOPE high in imagining a dorky little guy that is crazy smart, lives in his mom’s basement, and has his very own laboratory down there.  While he eats his mom’s meatloaf,  He works hard on my FOREVER cure that WILL GIVE ME TOTAL REMISSION.  They have told me it own’t happen.  But I say,  that NO ONE KNOWS THE FUTURE.  We can only live in the present.  We can only know about today.  And today,  no matter how I’m feeling… I’m fighting to LIVE MY LIFE AS BEST AS I CAN.

Ya know what, just as we came into this world,  we all must leave this world one day, too.  It’s no big secret.  And when I do.  I hope I leave this world LAUGHING.  (And if I could add surrounded by my fave people and family on a dance floor, that’d be reeeeeally awesome, too! )

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When we cast our cares upon the LORD, as I often bring up in PHILIPPIANS 4:6-7,  I feel the Marley song come on, “Every little thing’s gonna be alright.”  Why?  Not because I think everything is owed to me that I planned.   My life is not going as I planned.  I had to get over that, in fact, I ask you all to pray for me as I daily hand it over to God and work on getting OVER IT.   Whether we live out lives exactly as we thought,  or if our lives are taken away from us in one way or another.  If we hand it all to the BIG GUY,  it really will BE ALRIGHT.  He sees and knows waaaaayyy more than we do.  Thank God!  (pun intended!)

Although I may not know what in the world I’m doing,  HE DOES.  I’m so glad the buck doesn’t stop with me.  Or else me, and my 5 kiddos sure wouldn’t be here.  Heck,  I have a hard time making a decision at a restaurant with a big menu.  I need help.  And He’s never let me down, even when I don’t stop to notice he’s there.

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I’ll leave ya with this one… it  was in a reading at church recently.  I’ll summarize in my best BUNA style.

Elijah went out to the mount tops and stepped out to ask for God to show him a sign that He was there.  To speak to him.  He listened for a crash of thunder, a flash of lighting,  some major sign… but after a while,  all he heard was a soft whisper of wind from inside his cave.  That’s when he realized that God was in the whisper.  

It was explained to me that we can only hear a whisper from someone who is very near.  If we quiet all of our pity parties, stop searching for the HUGE signs/wonders/miracles,  we can see/hear/feel God in the every day whispers right near us.    I may have had to go through cancer twice.  I may not get a full remission.  I may have to do this for a long time.  But,  God has taken care of me and my family all along the way.  EVERY LITTLE THING HAS BEEN ALRIGHT.  It hasn’t been the miracle that we looked for.  But the love that we’ve felt, the doctors that we’ve found,  the community that has supported us has been out of this world.  It’s as if someone bigger (out of this world) has been whispering in our ears all along.  He’s with us.  And although my current treatment can feel monotonous and confusing… He hasn’t stopped working and doing big things in us.  I can see now that He’s giving me opportunities now to seize the day even more than I could before and is BLESSING me with a maintenance plan that allows me to fight for the life that I so desperately want to live.  I pray to dance on the dance floors of my children’s wedding receptions (it’s a long way off, but I WANT that… I BEG Him for that every day), But in the meantime, I enjoy the little things and soak up all that I can TODAY.

God is whispering in my ear to live for TODAY.  Take today by storm.  Hug my loved ones and thank HIM that I woke up to another gorgeous day.  I am allowed to grieve, I am allowed to fuss,  but even when I’m upset,  I can even thank HIM that I’m here to make the fuss!  Ha!  That’s a tough one.

Y’all I took all my own notes from earlier this summer and took the trips, ATE THE ICE CREAM, and kicked off my shoes.  So much so that my pants don’t fit!  Yikes!  (Add that to my list of things I gotta do!  Fit in the pants.  Working on it)

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It was all so worth it.  I made memories this summer.  I didn’t have to travel to do it, but I did.  I can make memories right here, and that what I’m doing now.  This is my FIGHT BLOG… and (cheesy, I know) but I’m taking back my life.

Enjoy yours.  Live TODAY.

And thank you for keeping me and my family always in your prayers.  It’s a two-way street,  you pray for me… I pray for you.  Deal?

God bless you all!

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