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.
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!
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!!!
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.
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!)
(click LINK BELOW to watch skit… SOOOOO WORTH IT!!)
- 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🙏.
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!
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!
(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!!!!!
*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.
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.
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! 😉 *
*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!!!!
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!!!
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!!
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)
2) thank you to my beloved mentor, Angelle Albright, and dear friend, Kim Hill:
Our family’s GoFundMe account: