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?? 😉 As Bowie sang, I’m turning “to face the change!”
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!!
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 aware😬🙄.
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!!!!
- 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 good👍
- 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,
Until I write again…..
God bless y’all!