#BRAINLIFE

Medical update with some fluff thrown in for good measure

June 30 marks the seizure that started it all. This "brain storm" has stood firm for about one year now, in conjunction with COVID and its comrades, the unknown and doubt. The combination has been a real drag; however, there are days when we can see a break in the clouds with a bit of light bursting through the ominous. A rainbow appears as a reminder that there’s always a new beginning, even if that new beginning looks a bit different. 

So, we’ve remained in the passenger seat, along for the ride, craving glimmers of those golden rays and colored arcs along the way. It's been a long trip, but we know there’s a blue-sky view ahead. 

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

--Romans 5:3-5

At the risk of sounding dramatic (too late) or whiny, but in the hopes of remaining honest and authentic, the best word I can use to describe how we are is "surviving." From brain surgery recovery to COVID meddling in our small business, we are slowly wading through the mire. We are learning the craft of “waiting with a good attitude,” as I tell my kids. Patience is always testing us, as we putter down this unpaved road, hoping for the nearest rest stop. In the meantime, we desperately cling to joy when we can capture it, prayers when we can muster them and gratitude when we dig deep to find it. Not always an easy practice, but worth the effort: 

"Always be joyful. Pray continually, and give thanks whatever happens. That is what God wants for you in Christ Jesus."

-1 Thessalonians 5:16-18

And with our seat belts fastened strong, we strive to wait with courage:

“Wait for the Lord’s help. Be strong and brave and wait for the Lord’s help.”

--Psalm 27:14

I'm not that great at any of it, but I'm practicing all of it. 

Amid the fierce fatigue, headaches, memory loss and (insert deep breath here) can't-breathe-ball-in-the-throat-heavy-laden-shoulders-tight-chest anxiety of recovery and just everyday COVID livin', I have learned I have chronic control issues and a different tumor-- apparently an upgrade from the Grade II Diffuse Astrocytoma. Because UCSF had more brains to poke at, the pathology report said with a big inhale, "Grade II Oligodendroglioma." Say that five times fast. They determined that the tumor has never been an astrocytoma. It has always been an oligodendroglioma. We are under the impression that this holds a better outcome--a golden ray of sunshine, to be sure. 

I have also learned from docs, and online resources backing them up, that these tumors can never become a Grade IV Glioblastoma (good news), but can become a Grade III Oligodendroglioma. They are likely to reoccur, but grow slowly. More info. from National Cancer Institute, American Brain Tumor Association, Healthline, UCSF Brain Tumor Center. 

My UCSF oncologist said that this is considered cancer and will need to be treated as a chronic illness. She continued with an analogy: “Look at the astrocytoma and oligodendroglioma comparison like ice cream. You have a different flavor. Before you had vanilla. Now you have strawberry.” My local oncologist explained, "This is a long marathon. We do not want to sprint to the finish line. We need to jog." We will be jogging through potential surgery again (they say, "likely in about 5 to 10 years”), chemo and/or radiation some time in the future (I say, "hopefully never"). Apparently, surgery is preferable at UCSF. The other treatment options are more detrimental. I will be monitored every 3-6 months via MRIs until that time. Some more of that waiting. Some more of that unknown. We will continue to live in the “gray.”

Docs were able to remove 85-95%; therefore, I am currently considered “low-risk” by my oncologist. I do not need chemo and/or radiation right now. I see my oncologist in 6 months to assess; my neurosurgeon and neurologist every 3 months to monitor growth and seizures, as unfortunately, I am still reminded of what’s left, even if minimal. 

While walking, my left palm began to tingle. Alongside dizziness, disorientation and a déjà vu feeling I couldn’t place, I was salivating and swallowing a metallic taste in my mouth. I kept walking. Scared out of my mind, I gulped back fear and “took control” by taking a deep breath with my head propped high, shoulders pressed and chest puffed, tears just one blink away--"It's nothing. I'll just do some research." Well, the ol’ internet says I could have a myriad of diseases like carpal tunnel. “Fantastic!” I countered, staring at the cold screen cackling back with too much info. to accurately discern.

Docs call them focal seizures. They have happened a handful of times since that first episode after surgery. Apparently, this can often occur after brain surgery when the brain is reconnecting and there is a surge of electrical activity. Makes sense. Additionally, leftover scar tissue will permanently cause seizures as well. Noticeable triggers have cropped up--anxiety, over-stimulation and an anti-seizure medication that has fizzled out over time. My neurologist recently received a special performance of Huey’s hit, "I Want a New Drug.”

Enter new drug. I'm about a week in on the new stuff while I file for divorce on the old stuff. The old stuff hasn’t moved out yet. Hopefully the new stuff doesn’t allow more seizures and cause fatigue, headaches, acute nausea and the ongoing mental battle. (Or maybe that's just me? Or maybe that's the hole in my head? Or perhaps COVID's rendition of “Groundhog Day?” It's all a crazy-making blur.) 

As mentioned before, I’m in the middle of a meds divorce--”trading one set of problems for another.” The old stuff is abusive. I drag my heavy legs and heavy arms behind me, my heavy eyelids before me. I often feel like I’ve spent a long day in the hot sun without any tan to show for it, just bloodshot eyes, a pounding head, severe anxiety, stinging lips and flushed face--and that's within an hour of waking up. 

Out with the old and in with the new internal tremors and inconsistent stomach pain. Weaning, experimenting, building tolerance, accepting my ongoing medicated state--it’s a process, but in the scheme of things, it is minimal. There are others facing bigger challenges. I'm one of the very lucky ones. I can walk. I can talk. I am not undergoing more treatment right now. Despite the fear of the unknown, we're not alone. God has been present for me in so many ways, but especially through the kindness, grace, love and support of others. A sticker on my computer serves as a reminder: 

“Sometimes miracles are simply good people with kind hearts.”

--Natural Life

A HUGE, GARGANTUAN THANK YOU to Jersey Mike's for the fundraiser and free sub. As one of my friends said, "Best sub I ever had." I couldn’t agree more. As stated on my FB page, “Thank you Jersey Mike's, dance family, friends and beyond! Thank you to everyone who bought a sub to support my family and I. I am overwhelmed by everyone's generosity, kindness and support. Your love is truly breathtaking. I wish I had more words than a simple "thank you" (though gargantuan) because my gratitude and love for each and every one of you is truly beyond what I can describe. You have truly blessed us. Thank you, thank you, thank you Jersey Mike's, dance family, friends and beyond. 🥰💃❤🙏”

And a continued thank you with infinite gratitude, love and appreciation: 

Friends and fam here, Newport, Italy, Australia, Africa and beyond 
Tribe Leaders 
GDSC Staff
GDSC Competition and Performance Company fams
GDSC Rec fams
Students!
Riverbend Church and our Turpin fam
Compass Church Youth Groups
Westside Church Prayer Groups
Compass Church Prayer Groups
Logsden Church
Dr. Levi
Porters
Ernst fam
Leary fam
Rhonda Coleman
Kate & Sheila
Sharby and Courtney 
Sue at Cottage Daycare
Sarah at the Vibe
Shannon Abero and Staff at the Vibe
Claire Liew w/ R+F
Trevor and his crew at Bridge 99
Gavin and his crew at Webfoot Painting
Matt Couzens at Bend Soup Club
Janelle, Hans & crew at Clearwater Restaurant in Newport

(Please, if you've noticed I missed somebody, REMIND ME! My memory is not what it was, especially with all the meds. Thank you for your patience as I learn to remember again.)

#ROBELIFE

Family update for those who are interested (or bored)

It seems we've been gifted with more time, but like sand slipping through our fingers, we really have less of it. I wish we were holding clay.

Any of those fanciful dreams I mentioned in my last update vanished with the virus: 

"I will spend the next few months Brandi-proofing the house, gratefully gaining weight, writing, reading (book ideas?), meditating, learning uke and languages, praying, singing and laughing with my family and beautiful friends (YOU!)."

No Brandi-proofing, just Brandi-not-doing. 

Gaining weight? Yes. Gratefully? I guess if you prefer counting blessings instead of calories? That sounds pretty grateful to me. I tell ya what I'm grateful for: those Hawaiian Host Toasted Coconut Milk Chocolate balls from Costco. I'm also grateful for my Costco robe (#robelife), which I wear less of these days (and if I do, I'm prepared with #daylife underneath).I'm also proud to say that for the past month or so, my bed has stayed pretty made for more than a couple of hours per day. Killin' it!

Writing? Yep! You're lookin' at it-- an overly lengthy "update" that took far too long to craft. 🤦‍♀️ Sean: “Just post the damn thing!”

Reading? I wish. I’m failing at the Bible study group I joined. Sorry, Angi! 

Meditating? Absolutely. Meditating on not pulling my hair out from yet another complaint about Winnie the-two-year-old asking for the impossible. She screams like a banshee because she can't put a Barbie dress on an over-sized stuffed animal. "I'm trying to help her! It just doesn't work, Mooooooom!" wails the wonderful seven-year-old second mom from above. 

I trudge up the stairs for the umpteenth time since I am the first mom. 

"No it doesn't, Pen," I grit, biting a hole through my bottom lip, wiping sweat from my eyeballs while attempting the impossible. "Fat stuffie in a little dress," I hum, imagining Chris Farley in his little coat. I just can't shove this bloated paw through a pin-hole. “We’re moving on from this irritating endeavor,” I huff. Abort mission. Onward to helping Pen with her next math problem and assisting Charlie with wiping her little butt. Cue blood-curdling scream from the kid who can’t stand “No.”

There's been as much prayer as we can muster--so much material to work with, right?!

Ixnay on the riendsfay--COVID commandeered our social life, obviously. We’ll likely laugh more when Dad’s around. He's on the coast. Stupid COVID. 

Ok. Enough words for now. I feel like Forrest Gump: “I’m pretty tired. I think I’ll go home now.”

So, farewell until next time. The family blow-up pool and blue-sky view await my children and I. “It’s gonna be a bright, sunshiny day.”