Ch-Ch-Ch-Changes

LATELELYūüėā ok! I know i‚Äôm kinda noisy, but LATELY i‚Äôve been pretty quiet to myselfūüėČūü§Ē

So, it’s been a while, as usual. ¬†But that’s because I’m learning and adjusting to many changes. ¬†In my quiet, sometimes, I battle out my strategies of my secret wars. But now I’m ready, I think?? ūüėČ As Bowie sang, I’m turning “to face the change!”

Click link above (on his handsome pic above to here Bowie sing ‚ÄúChanges‚ÄĚ)

¬† What big Ch-Ch-Changes, Buna? You may ask. …Or maybe you didn’t. (Shoulders shrugged) Regardless, my blog, my thoughts, so I’ll describe for you anyway. Pull up a chair.

How grateful I am to have changed from infused chemotherapy to oral chemo that I order and administer myself. ¬†Although it can be complicated and a bit difficult to keep up with and on top of while my hubbie and I are also balancing work and 5 kids who are split in even more directions than ever before. With our oldest now in high school in¬†one town and direction while the 4 others still in elementary and middle together are in a school in another town on the opposite end of our north shore area, away from where we live, and away from where I receive my oncology check ups, scans, and other treatments.There is rarely an easy afternoon. We’re all over the map now, and the changes are bigger “pills to swallow” than my actual hand fulls of pills taken morning and night! Oy vey!

¬†Don’t get me wrong, ¬†I’m loving the freedom and independence in my schedule, having all 5 of my brood in school and having oral chemo to allow me the freedom to make my own schedule (vs. previously scheduling everything around my infusions, follow up injections and fluids that lasted the whole week after, etc.). Not to mention this chemo isn’t nearly as intensely nauseating nor does it make my hair fall out!!

Wahoo for hair and no pukes!!

When I first heard about the pills vs. infusions, I felt like this:

Truly, immediately returned to being part of my normal “exciting mom life” of running my own errands (ooooh! ahhh!), running the Target aisles with the “cool healthy mamas” as we all browse the dollar section first, as if we NEED those random holiday decor items for our homes (that aren’t $1 at all, the ones we actually shove in are cart are $3!! Sneaky sneaky Target!) ¬†I flip my pixie turning mullet at you! (seriously, the back needs a trim, yo!). Regardless, we keep it in there, because we know there’s gotta be¬†something¬†we can do with those cleverly crafted fall pumpkins with welcoming quotes and chalkboard signs to match. Right?

What blindsides me every time is the fatigue (major side effect of being on chemo every day now) and sore, peeling feet (another fun side effect from one of the types of targeted chemo that I’m taking which we continue to adjust to keep it both strong enough to keep my recent scan of no active tumors the same, while also keeping the peeling and of my feet and chance of infection low to not attack my immune system in such a way that I would not be able to receive any of my chemo). Excuse my constant run-ons. I am awareūüė¨ūüôĄ.

Ch -ch-ch-changes! ¬† ¬†Yet again, I cannot hide from it. ¬†I gotta “turn and face the change!” ¬†But what Bowie didn’t mention is that (to the tune of Changes)

“Its GODS GRACE IN ME! ¬†And GOD SPANS ALL TIME!”

……………………….

SO WHAT NOW?

  • I’ll continue to take life as it comes. ¬†Every single time people ask that question: “Hey Elise, ¬†you’re looking, great and healthy! How do ya feel?” – I answer as positively, with all genuine reality and honestly as I can…reply, “Well, I’m HERE! ¬†I’m happy to be here another day, because it’s a gift, and I’m grateful to make the most of it. ¬†So that I will do today and the next. One day at a time.” (That’s all we can do. ¬†Live for the present! ¬†Right?)
  • I’ll continue enjoying being involved in mom-duties that I can easily take for granted when I had a completelely clean bill of health. ¬†Target and grocery runs, lunches (which we actually teach the kids to make the night before while I write love notes and stick them in the lunch box;), and visiting to read at preK story time!) Soaking about the moments that seem to be flying by faster each year. And eccelerating into highschool social life on full speed ahead!!!!

Parents’ rxn to the beginning of first kid starting highschool!!!

  • Next, we will do another PET Scan again sooner than later to make sure that the scans are staying clear. ¬†This is sooner than we would normally do them; however, with the closeness of my relapses in the past and the fast spreading nature of my past tumors and severity of them once they travelled throughout my brain it’s important.
    • Did you know at this point, my cancer has metastasized to my: breast, lymph nodes (which is how it first began traveling and metastasizing), lungs, liver, chest wall, abdominal wall, ¬†and back to a few of those again, while we now keep an eye on a spot or two on my lower spine in question. So far so goodūüĎć
    • Did you also know,¬†that through the outstanding medical team spanning from Dr.Jay Saux and his team at St.Tammany Mary Bird Perkins/Ocshner Medical; Dr.Charlie Woods-Head Radiologist at Mary Bird Perkins Baton Rouge/Our Lady of The Lake Radiology, Dr.Alan Stolier and Dr.Scott Sullivan at the Center for Restorative Breast Surgery, and the Team of Doctors at MD Anderson… We have kicked too many tumors to count EVERY SINGLE TIME!!!!!! ¬† As was quoted after my last pet scan came out clear from my man brain tumors, ¬†liver, ¬†lung and abdominal tumors… “Medicine just doesn’t work like this! ¬†Not this fast. ¬†Not a CFC (Complete Full Recovery) like this! ¬†This is freakin’ miraculous!!!” –Dr.Saux
    • With the combination of medical teams like this, ¬†this new medication that I’m on with my hubbie at my side to now help me to organize my pills and help me every Sunday to make sure I have enough or each week and see if we need to order more, etc., along with our faithful community of friends who have helped us with carpooling kids when needed, bringing meals and gifts cards to cover meals when I just don’t have the energy for one more thing, especially when my blood counts have been off and the fatigue is too much. ¬† Your selfless gifts and thoughts and prayers keep me going. ¬†Especially the prayers. ¬†I believe whole heartedly in the graces from the prayers of your families. ¬†I hear stories all the time of families praying for us in the car, at bedtime, etc. Blows me away. Moreover, humbles me daily.
    • Entering into and sharing the journey: ¬†I even hear of entire schools praying for us at morning assemblies talking to their students about the power of prayer and inviting them in to this journey and asking/allowing their students to be a part of a miracle story, that they are now witnessing first hand!!! ¬†How real and tangible is that for them! ¬†I fell to tears when I heard that!!! ¬† I can’t help but point out Michael Krauss, ¬†principle at St.Peter Catholic School here in Covington for using such a teachable moment with his student body and having the faculty continuing the same over throughout the day over these past few years, blessing our family and community alike with grace during the ups and downs of this journey. ¬†Wow. ¬†Those kids will remember that. ¬†Our kids have heard about it, cried tears if gratitude and will never forget that. Not only from this school, but so many who have written our names on chalkboards, on planners, have alarms set w our “3 little birds song” to stop & pray. It is tremendously kind and overwhelming indeed. That example is precisely why I share my story. ¬†I share never to draw attention to ourselves, but to share in the cross. ¬†The cross that we have been given is our gift full of graces. If we only notice the splinters and we hide it in the quiet, ¬†no redemptive suffering can be used, because I’ll be so hidden, I won’t even know of any one’s suffering but my own, nor can other’s help me to bear it through the graces of their prayers because they didn’t have the chance. ¬†I hid that opportunity from them. ¬†They’ll even miss the resurrection of my cross, if God so chooses to heal me. ¬† I pray people know my story and, I thank God with a hopeful heart for healing me in advance. ¬†And thank all who’ve prayed for me for being apart of this miracle that I pray can and will happen.
    • What will the miracle be? ¬†No one knows. ¬†Maybe it will be that our community drew a little bit closer and started praying more. Maybe that the person who had no idea how to pray started to do so. ¬†Maybe families came together for a reason that they felt passion about to talk to God. ¬†Hey, I’ll take that! But let’s ask him for a little more.
  • Lord, if it be your will, for my family, my husband, my 5 children, all of my loved ones and those dear to me, and ¬†my community,

    I beg you to HEAL ME. IN HIS NAME,  

    AMEN.  

    Until I write again…..

    God bless y’all!

    Break Free From the Chains

    Wilson Phillips sang it best,

    “If you hold on for one more day… You can break free free from the chains!

    (As you may notice throughout this post, I’m getting a little¬†nostalgic with my music today)

    I guess that dynamic trio really made an impression on me with their bold red lipstick, cool hair varieties, and emoting into the camera on the beach. ¬†Cuz that motto is precisely how I’ve been living. “Cuz things’ll go your waaaaayyyy. Hold on for one more day!”

    Let me not leave you hanging any longer.  No. I have not been cured.  I remain in the incurable state of Stage 4 Metastatic Breast cancer.

    However,  I am still treatable! Right?

    So for the past 2 weeks, ¬†we’ve been testing the fortitude of my latest new course of my treatment. ¬†As I’ve mentioned before, I am no longer receiving infusions for my chemotherapy, but receiving 2 oral chemotherapies daily. ¬†I take one form of chemotherapy every morning from now on, indefinitely until it no longer works. ¬†(My oncologist, Dr.Jay Saux, even has plans for what he would do in the case that the chemo stops working. ) ¬†Why is that? Every treatment has a shelf life. As your body starts to figure out what you’re doing to it, the cancer cells start figuring out the programs to get around the treatment. ¬†Thus, we’re always scanning and reevaluating the progress in my treatment to see if we’re still on course. ¬†At this point, God has made our medical team unstoppable! Can’t stop this! Can’t touch this!

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    SO HERE’S THE GRRRRRREAT NEWS!!!!

    I’ve undergone a full body PET scan, a lumbar MRI, cervical MRI, thoracic spine MRI, and finally, a brain MRI…. all in the past week! Whew! ¬†These are scans that I now have to do every year at this same time of year. ¬†At this time of year since that first mammogram in July of 2014 (which led us to the biopsy in August which diagnosed me with STAGE 3 invasive ductal carcinoma), we haven’t began a school year without new difficult news of a new diagnosis or relapse. ¬†My oldest daughter, my “Sidekick” as I call her, had begun to and often announced that she no longer liked her birthday because it was so mixed up with emotions of fear that Mommy is going to get another bad report. Meanwhile, her siblings were afraid of coming home to Mommy and Daddy sitting them down to say my hair was going to fall out for a 4th time because I had more tumors to treat with chemo and more radiation. ¬†The beginning of school has become more and more challenging for us on so many different levels that we can’t even fully verbalize.

    BUT WE HAVE BROKEN THE CHAINS AND ARE SET FREE FROM THAT CYCLE.   NOW WE CAN CELEBRATE THIS TIME OF YEAR!!!!

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    SO WHAT”S THE SCOOP? What are my results this time??

    • FULL BODY PET SCAN:¬† All tumors are clear!!!! They have only seen a “C.R.” (complete recovery) like this once before, but NEVER this fast! ¬†Doc: “HOW does this keep happening? I mean, it’s freakin’ miraculous! … Us: “GRACE of GOD!And lots of prayers”

    (Dr. Saux, referred to above, sent one of his happy pics with a Congratulatory text & pic below! Makes the whole world smile with him!)

    • MRI OF THORACIC SPINE, CERVICAL, LUMBAR:¬† All looks very clear. ¬†Nothing of real concern. ¬†We’ve been watching one area on the lower spine for a while and testing my spinal fluid for a while (which has remained clear), but will continue to keep an eye on it. ¬†After docs both here and at MD Anderson have looked at images, they feel I can remain on the same meds bc they cross over the blood brain barrier and are working well. ¬†We’ll scan again soon. ¬†All else is clear! ¬†This is NOT in my spinal fluid, which is amazing.
    • MRI of BRAIN:¬†Saved the best for last. ¬†MY BRAIN IS ALL CLEAR!!! I REPEAT, MY BRAIN IS ALL CLEAER!!!!! ¬†The specs that he sees are either dead tumors, no new growth, and could be counted as scar tissue. ¬†He will continue to scan every 3 months to keep an eye on everything. ¬†But as for this brain…. ¬†He (my awesome radiologist, Dr.Charlie Woods, ¬†said, and I quote…

    Dr.Woods: “What have you done to receive so much favor, because this is clearly an act of God! Someone’s looking over you. ¬†Medicine doesn’t work this fast and clear!”

    My response : “God showed up!

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    Isn’t that incredible?!?! ¬†I am in awe of the way God is working. ¬†And he continues to work in my life, because I know I’m not cured yet, and have a long way to go to keep fighting this battle for what is probably the rest of my life, but from what I’ve seen and lived and come to know…. if I continue to believe. ¬†I mean, if I truly believe that I can let it go, & truly give it to God, “glancing at the problem and gazing at Jesus”…

    HE WILL SHOW UP EVERY TIME. (“Time After Time”)

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    I share this not because I believe that I am favored anymore than anyone else. I share this to give hope that it is possible. God can do the impossible. I know the reality of my situation and I know how things could be. I have lost many friends and have many friends who have not received such news. This keeps me humble and forever grateful to be so blessed. It also keeps me living in the present and grateful for today. I know how quickly things can change. There fore, today I am grateful to wake up and enjoy my family. And I have great hopes, looking forward to tomorrow.

    #HumbledAndThankfullyLiving4Today

    My brother, Fr.Beau Charbonnet, prayed over a huge crowd of us at a praise and worship group (Singing at the top of my lungs in prayer is my fave type of prayer. I get lost in it!). He closed his eyes, reached out, & asked for the words. And out came….

    “BUST IT UP, JESUS!”

    Talk about truth in the midst of the laughter. And look at what happened!  HE came in and busted it up!  Tumors? Gone!  Busted up.  Thank you, God!  You busted it up!  My God fights for me!  He fights for us all if we let him. If we really, truly step aside and let HIM. Please, please, PLEEEEEASE check out this link below that my husband found and has been getting us through these last few weeks of getting ready for school, getting ready for these scans, and preparing for this time of year for our family.

    img_1022https://www.youtube.com/watch?v=JezG-ZNQXfE

    Can I get an AMEN on that one? ¬†I mean sometimes we can complicate God. ¬†At times things going on in our lives or our lives themselves can be very confusing and complicated. ¬†But your relationship with God doesn’t need to be. ¬†Just a simple…

    “HELLO, thanks for waking me up today.

     Could you do that again tomorrow? Have a good one!

    AND/OR:

    Thanks for blessing me and all that I have, even if what I have is hard,

    help me find the good and be the good in today.”¬†

    AMEN.

    It can really be that simple. ¬†If you haven’t started talking to HIM, I’m living proof that God can and will show up, if you just ask. HE may not show up exactly how you asked, but HE hears you and HE answers when and how HE knows is best for you and your family. ¬†It’s crazy for me to be so accepting since it involves me, my husband and 5 kiddos ( and all my friends and family to get dragged into this for so long. But, we’ve grown so close and have seen so many blessings along the way!) HIS timing seems wierd and can seem daunting, but HE’S right on time. ¬†Believe it or not. ¬†If I ever get lost or scrambled, I know what’s gone wrong. ¬†It’s always …. (ok, last cheesy music flashback),,,,

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    Thank you for getting me this far. ¬†Don’t leave me now! ¬†

    Seriously, Don’t leave me now. ¬†The road before me is long, and my treatment is indefinite, but as my grandmother, “Pic” (my mom’s mom) would always say, “If God’s gonna take me, I’m goin’ with my boots on!” (In other words, she’s not going down without a fight!” ¬†And that’s just what she did. She went with her boots on. ¬†My boots are on, ¬†I plan to fight just the same.

    *If I could ask you to pray for me for the side effects that have gotten me off of one of these fabulous chemo pills that are working so well, I’d greatly appreciate it. ¬†They attack the bottoms of my feet and my hands, causing ¬†a lot of peeling, burning & pain. ¬†It makes taking care of this adorable crew of mine pretty…. TRICKY!!! (OK, one more, sorry, I said I wouldn’t….)

    And that’s true, RUN DMC was right! ¬†It’s TRICKY!! But rather than just “rockin’ the rhyme” as they put it. I gotta rock cancer and balance life in general, too. Yet, I know I am not alone! We all have our “cancer’s” in our lives, roller coasters, ¬†and our crosses. Which is exactly why we started BUNA’s HOPE!

    In honor of the blessings that we’ve received with these scans, we’d like to pay it forward through our non-profit (your non-profit bc of your support). Buna’s Hope will be expanding its reach to families internationally. We’ve researched & decided to work with Food for the Poor to build a home for family as well as a water well and pump for clean water for a village! We feel this would help many families that are in need and accomplish our goal of bringing JOY and HOPE to families in need of a sign of God’s love for them. Meanwhile we ask YOU, TEAM BUNA, to add the part of PRAYER for those families in their struggles (that grace will come upon you in return).

    That said…

    THANK YOU!!!!

    Elise/Buna