I did finally get to meet my newly established neuro-oncologist earlier this month, January 13th. Dell and I had never really had any involvement with Piedmont doctors regarding my seeing specialists, until Dr. Erin Dunbar. Dell’s Gastroenterology doctor is within the Piedmont system, and he’s been great for Dell. But, as far as me having a care team within the Piedmont system, this was essentially me starting almost from the beginning. You’re always hesitant about seeing a new specialist when you’ve had a plethora of many bad bedside manner experiences, or doctors that flat out just don’t hear you when you talk. It can get disheartening, and straight up frustrating. But Dr. Dunbar, and really the whole Brain Tumor Center, took us by surprise, and in a good way. It was refreshing. Emory has many great doctors and surgeons within their system, but, have to say I’m rapidly becoming a fan of Piedmont. She and another colleague were actually brought to Atlanta, and they essentially founded the Brain Tumor Center when they realized that there was a need for a close to home, care facility that actually treated Georgia’s brain tumor patients. They have seriously and successfully established, within Piedmont, this jam up center that addresses all kinds of diseases and conditions pertaining to the brain. I got landed with this incredible doctor because she also has a special interest in Neurofibromatosis patients. What’s even more cool, is that two of her best friends, who she went to medical school with – actually work at NF centers of excellence. One at Johns Hopkins, and the other MD Anderson. So, she has access to knowledge from the centers that I can’t travel to right now. Talk about a blessing. She’s also working on hopefully getting me into clinical trials in the nation, as well.
Anyways as some of you already know, I had more scans completed on January 21st. And, if I’m being honest, I pretty much knew what to expect based on what I feel nerve pain wise, within the pelvic area. But it’s still pretty shocking to actually see the tumors in their mass population on actual films.
So these are just a few of the 1,553 images that I personally pulled from the disc. My computer is flat out just not equipped to handle the software that hospitals use to view MRI films. So it took hours to find images that had distinctive views of some of the major tumor clusters that I have. I don’t wanna bore you guys to death with copious amounts of redundant images, so we’ll stop there with those sequences.
However! Not that MRI scans are a day at Six Flags, but this was seriously THE coolest MRI I’ve ever had. And I’ve had around six or so.
Got my scans done at the Mountainside Piedmont hospital in Jasper, Georgia. Heck of a lot closer than us going to Atlanta. When you live in a small town, you always worry the equipment and machinery at small mountain hospitals pale in comparison to hospitals in major cities. But, I was shocked to learn that Jasper’s Piedmont hospital received a pretty state of the art Artist machine, made by GE. As it turns out, based on what my awesome MRI tech told me, this hospital was the first in the state of Georgia to get this two million dollar machine. And, the sheer cost of this bad boy isn’t what made it awesome. It was the fact that I got to listen to classic rock and roll for a solid two hours. Super cool, right?!
When the tech opened the door to the room where this machine is, I sorta felt like someone from the decades ago that time traveled to this shiny future with flying cars or something. Okay, little dramatic. But still! The glow that this thing emitted was unreal. It looked so brand new and was definitely strapped with top of the line bells and whistles. It was definitely unlike any machine I’d been in, that’s for sure. So, we’re standing there, and he goes “So what kind of music would you like to listen to?” I’m already in awe of this thing, but, I get to listen to music too? Kind of shocked and slightly confused, I’m like.. “….. Music?” He goes “Yes!” Not really knowing how to answer, and also not entirely sure what genre I wanted to hear for a solid two hours, I question-answer back with, “Smooth jazz maybe?” He’s like, “I can do that!”
I get positioned on the table and he hands me these earbud/earplug things. I put them in, and insanely perfect timing. What plays? No song other than Creedence Clearwater Revivial’s “Up Around the Bend.” I’m guessing it was that opening guitar riff that just felt right at 8:00 in the morning. It was enough to juice up my mental adrenaline, knowing I’d be laying in this super uncomfortable, expensive tube of ear-piercing screeching, loud banging, and thumping, for a good amount of time. I threw him a surfer thumbs up, and was like “Forget the jazz, we’re good!” I heard a faint laugh through the now, pleasurable concert, playing in my head. It was awesome.
The price tag of that machine didn’t do a whole lot to cut down on the standard obnoxious noises that MRI machines are characteristic of. But the music is quite the nice touch, so I’ll be requesting that machine again, that’s for sure!
TIME TO SEE MY ONCOLOGIST
Naturally my oncologist wanted to see me to go over my scan results, explain some things, you know… the normal post scan deal. It was probably the most detail oriented visit I’ve ever had, if we’re being honest. Before that day, I’d never had a doctor or a surgeon literally go through almost every segment of my body and actually explain what we were looking at.
I showed you guys the images that showed the most tumors, within the pelvic area. But I apparently failed to find this one in my solo scanning.
I circled where the tumor is for easy reference. This rather large fella is sitting on top of my bladder. Smashing it, really. I drink a lot of water throughout the day, so as far as bathroom frequency it hasn’t really been something that’s noticeably stood out, thank God. But apparently going every hour isn’t mega normal. We are working on establishing me with a GYN that specializes in pelvic floor pain, and someone who might have a little more insight or suggestion on how to approach this intruder. We want to prevent issues later down the road with incontinence. (Yikes.)
I received the reports over my patient portal about four days before this appointment. So, when I read over the MRI reports by myself I was really curious about one area in particular, that’s never been scanned before January 21st of 2020. Which was, my head. It wasn’t a full blown brain MRI, this was more of a basic body blueprint almost. So the detail wasn’t what it would be as if I had a full on brain MRI. Just enough for the radiologist to make mention of some ‘white matter’ in my cerebellum, and make mention of a few other suggestive possibilities.
Like I said, there were over 1,500 images, and seemingly all out of order, so finding a clear image of what was reflected on the actual report that I read, wasn’t really a success.
But, bottom line? Radiologist notated that there were multiple brain lesions.
I wasn’t really ready to read that. As you could well imagine. I mean, me being pretty much gridlocked in the NF war, I was expecting to read that I might maybe have an Acoustic Neuroma, or a Vestibular Schwannoma. It isn’t that, or at least isn’t appearing that way. I just happen to have something else. Possibly. We’re not sure. I might have a few schwannomas in the brain. Who knows, at this point.
Dr. Dunbar meets with a rather large group of like minded doctors and surgeons every Wednesday. This tumor board comes together and discusses rare cases that have potential for collaborative work ups.
BET YOU GUYS CAN’T GUESS WHICH GIRL WAS THE “ROCKSTAR” DISCUSSION CASE WEDNESDAY JANUARY 29TH.
Dr. Dunbar took my case to this conference and apparently around fifty doctors got a glimpse at my mystery gene makeup. A lot of them asked what they could do to help in my case, would I see them, etcetera. But, money doesn’t grow on trees! So for now, she is keeping me on the straight and narrow. The absolute necessary steps, at the necessary times.
We are planning on getting the brain MRI done in the next couple months. She isn’t overly concerned with expediting the scan in the fashion of “you need this scan yesterday,” type of urgency. But it is a priority, and will be happening soon.
This condition is one where you can’t live in a state of constant worry and fret, over the things that may or may never happen. This condition is one where you learn that life is about the quality of the day, instead of being a slave to worrying about the quantity of life. Our life was meant to be enjoyed in the here and now, not the tomorrow and the next year. Tomorrow might come, but the day after that, Jesus could return, and the time we spent stressing over potential long term temporal enjoyment – will have essentially been wasted time.
LET US NOT WASTE TIME WORRYING!
Every day is precious, even with the pain. Because when one area of your body or your mind roars loud with what ails you, it’s almost like it centers your subconscious and your conscious thoughts around what feels strong, instead of what feels wrong. It’s important to shift that focus to everything that’s good, instead of everything that’s bad.
I have no idea what my future brain MRI will look like, or what the reports will say. Recently, a good friend reminded me that scans can be scary. But it’s not my job to worry about it. It’s my job to lay it at Jesus’ Feet, and seize the day He has given me. Picking up the phone to Google this, that and the other thing doesn’t help the anxiety of the reality. It adds to it. You gain fear, instead of peace, and it takes away the joy of the day you’re living in. It’s simply not worth it. So don’t do it.
Cherish the day, the time, the loved ones, and shine the light of the Kingdom whenever you can!
#endnf #nfwarrior #schwannomatosis #MRI #nervetumors #keepthefaiththroughthefight #daughteroftheking #piedmont #jaspergeorgia #oncology #drdunbar #atlanta #braintumorcenter #mdanderson #johnshopkins #creedenceclearwaterrevival
16 comments on “Solidly On The Schwannoma Battlefield”
What a miraculous journey…
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Beautiful Warrior… Your Faith will move mountains. (Matthew 17:20)
You are like sunshine in the midst of a storm. As you are suffering through this battle, you are giving hope and encouragement to others. May God provide you with comfort and strength as you continue this journey.
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Thank you ❤❤ Ready to give God the glory anytime, anywhere!
Leslie. Do you ever speak w/other schwannomatosis patients on the phone about your experiences,symtoms,doctors,etc.
I don’t, actually. I absolutely would though!
Leslie, thank you for sharing. I felt alone & isolated. Thank you for your encouraging words & reminding us to keep our mind on Christ, & reminding us that although this trial is long & painful & whoever God puts in our path we are to glorify Him to others. I have been struggling with my faith, hope & how to live well in pain w/limitations & excepting that my limitations are also my husbands.
Lynn (schwannomatosis patient)
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Lynn, keep the fight up, my friend. Don’t give up, and always look up ❤🙏 Proud to be your sister in arm through this journey.
If you decide to travel to Johns Hopkins your welcome to stay with us. We are about a 1 hour drive. That is where I have been seen.
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Thank you 🙏
Been praying for you regularly, but when I heard this latest, it’s as if the Lord is constantly reminding me. As your mom is my hairdresser, I decided that everytime I mess with my hair…combing, brushing, shampoos, etc. I would pray for you and your Del, as well as Robin and Ken. I am so glad to see your constant leaning on the ONE Who never fails us. I will keep up the prayer battle. Sandi Brock
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❤❤ Thank you..
I’m so happy it’s a really great e experience and to feel like you’re truly being cared for! ❤❤❤❤
Sent via the Samsung Galaxy S8+, an AT&T 5G Evolution capable smartphone
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I am praying for you, my sister in Christ! Your beautiful words are so refreshing and uplifting even in your time of struggle and discomfort. It is so sweet for me to see how you are trusting in Christ for everything and sharing that with the world! He is the only way that we can get through life, through the years, months, days. moments!!!
When we see your struggle and how you give God glory in it all, it reminds us of what is important in life. We are so easily wrapped up in the world, our culture, day to day life, that it is easy to take our eyes off of what is most important and most beautiful in our lives, no matter what we are facing. Jesus is the only way, the best way!
Thank you for sharing. It means so much to me.
I miss your smiling face at work!
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YOUR words! ❤ Jesus IS the One that provides the strength needed and necessary – and sometimes that means minute by minute.
I miss you too, so much. Love you Jeanne!!
Leslie, FYI. A new clinical trial is going on at Hopkins, I believeit started in May.. Contact would be Dr. Blakeley. I have been seeing her since last October & just spoke w/her yesterday .
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