I’ve never been a gambler, or a risk taker for that matter. I’ve always been a fan of definitive plans, punctuality, sureness, ya know, guarantees . The act of stepping out on a ledge and taking a chance has never been my comfort zone. The concept of making a gamble, or taking a risk to possibly gain a reward, or to place all your stakes into something unknown and uncertain? Well, that’s just a daredevil mentality that I’ve never identified with.
I know what you’re thinking. Where’s the faith in guaranteed outcomes? The difference is, putting your faith in God, and putting your faith in man, and in science.
THERE’S NO GUARANTEES IN SCIENCE, OR WITH MAN
There’s just not. It’s ridden with variations, unexplainable causes and effects, and general uncertainty. A hypothesis, hypothetically, is nothing more than a guess, a presumption. I’m sure those who follow science like its the all saving messiah would disagree with me, but they’ve not been in my shoes with some of the medical propositions I’ve been presented.
BIOPANNING AND DNA ALTERATION
Tuesday, July 13th, Dell and I met with my neurosurgeon – the same man who operated on me in 2018. I hadn’t seen him since 2019, and that was a consultation that eventually yielded the failed cryoablation.
What was presented was what Dell and I expected. “Options” that aren’t really desirable, or hopeful options. In essence? There was no course of action that we decided on, because no course was weighted with optimism, and definitely had no promise of even a slight guarantee. Black and white: There is no method, treatment, surgery or procedure that is guaranteed, or is even a suspected guarantee, to offer real remedial help or correction of my condition.
I’ll do my best to break it down into the condensed version.
I have an innumerable amount, all precariously placed. Nothing has changed. I don’t have any less tumors, and the ones I have aren’t going away, or shrinking. If anything, I have more, and the ones I’ve had continue to grow. You guys gotta remember – it’s my DNA. It’s a DNA defect in a sense… my body is programmed to grow them, and no one knows how to turn off the gene that grows them. (Hence clinical trials and scientists playing around in labs with ideas and manipulations, utilizing various and assorted viruses and whatnot to make an attempt to rewrite DNA.)
Go ahead and re-read the above in bold.
That? Is what those of us battling Neurofibromatosis are looking at when people talk about cures. To find a “cure” means basically rewriting DNA. And, this girl ain’t down with it. It involves too many risks (without any real reward), and in my opinion, it offers a potential scary outcome.
MY NEUROSURGEON WANTS TO CONDUCT HIS OWN EXPLORATORY STUDIES
So, with the number of tumors I have riddled throughout my pelvis, no cluster, or any singular tumor can be targeted without a more dire effect. We’re still talking about messing with nerves that control my bowels, bladder, and general sensatory nerves that control feeling and basic function. I’m not down for it, and I don’t think any woman would be.
The only small cluster of tumors that my neurosurgeon has any interest in going after, are the ones that lie in the subcutaneous fat on the bottom left glute. If I did consent, what would happen with the tumors excised, would be biopanning with Leslie’s cells. It would be the utilization and manipulation of various and assorted viruses to see if there is some magical virus that somehow turns off the gene responsible for growing tumors. Then, if that’s successful in a little dish in a lab, they’d inject the virus into my body, and hope that it shuts down tumor production.
I’d be a guinea pig. Cut and dry? A lab rat.
Well, those of you that truly know me.. know I’m not boarding this crazy train. There’s no way. No chance I’d agree to it, at all.
Even if I did… there’s no way to predict if that virus would cause fifteen other problems that might be far worse than what I have going on. It’s hard to imagine.. but you never know.
Even with the train wreck my pelvis represents …. it would still be me wagering my current status, for a medical discovery with slim margins of success. That might mean peace and bodily harmony, but it more likely means chaos and more bodily disruption. I’ve had three years of tapping into “Let’s try this.” And I always respond the complete and total opposite than what they predict and promise.
YOU CAN ALWAYS SHOCK IT AWAY, RIGHT?
Two words: spinal stimulator.
This was the other option presented. Again, a non-option. I tried the internal tens unit deal back in 2018. My neurosurgeon still thinks it’s a viable option for me, even after we attached leads into my sciatic and femoral nerves three years ago. It was a temporary set up, something for me to try while healing from the surgery. I had electricity pulsing through those two nerves for a week, and the pain was untouched. I’m not sure if I’m a fluke or if this is common, but based on the trial stimulator three years ago, I’m not chomping at the bit to have a permanent one set up.
There’s a chance for infection, the battery is gonna die after so long, then there’s the very real possibility of this thing causing an autonomic flare. Seems every time my tumors get poked, prodded and manipulated, it sends my stuff spiraling into an untamable flare that needs heavy opioid dosing to bring me back down to my “normal” pain fluctuations.
ACROSS THE BOARD
Every warrior presents unique variations of Neurofibromatosis. Sure – there are three main branches that scientists cling to, NF1, NF2, and NF3. That’s a pretty vague group of classifications to shove each and every unique mutation under. I’ve not met anyone (and I’ve met a lot through the different social media platforms, and I do mean other countries besides just the U.S,) that presents even close to how I present. I’m presumably Schwannomatosis based on the amount I have, but yet the first fifteen tumors that were excised, came back as Plexiform Neurofibromas, that were 100% internalized.
I straight up asked my neuro-oncologist if she thought I was a candidate for any trials or drugs, and she said, “no” without any hesitation. And I appreciated her candidness. She is saving me from possible total body wreckage, because I don’t present any one specific way. I don’t have a “branch” that I definitively fall under.
Which brings me to my next point.
Schwannomatosis might house all three branches, who knows. I could be carrying the mutation of NF4, it’s just that it hasn’t been named because it hasn’t been discovered. Which is why a “cure” isn’t something easily achievable and it may never be. I’m not trying to be a Debbie Nancy about it. I’m being completely serious and realistic about the fact that it’s gonna be hard to find one, two, or even three compartmentalized cures that fits such a broad group of patients. How can scientists latch onto the idea that only three separate cures will fit each and every mutation like a glove?
Seems like a stretch to me. The manipulation of viruses to somehow rewrite DNA? It’s borderline playing God, and that’s playing with fire – in my opinion.
BUCKLE UP FOR THIS ONE
Another stretch is shooting up people who already carry gene mutations, with another DNA modifier. I don’t need to outline it, or spell it out. If you disagree, that’s your prerogative.
But it’s also my prerogative to speak my truth.. and censorship be damned.
I typically steer away from politics and heavy topics on my blog, but I cannot and will not hold my tongue any longer about what’s being administered to the public, and the severity of it. Lies, vaccinations, fear mongering, they all go hand in hand. But, as far as vaccinations go – as someone who is a voice for Neurofibromatosis, I feel it’s my duty to voice this. I know I’m the rarity here, because many in the NF community feel differently than I do. I might take some backlash, name smearing, what have you, but I don’t care. l can’t get behind a one-sided ultimatum perspective.. which is what abounds. I don’t understand how this isn’t screamingly evident.
I’m not demonizing or degrading anyone who chooses to get vaccinated. I just wish the pro-vaxxers didn’t feel the need to virtue shame their brothers and their sisters who simply choose a different health path.
Side effects are being hushed, brushed off, and hidden – but we’re starting to see some serious adverse reactions now from recipients of the vaccine. I’ve seen some who are presumably fine, but I’ve also noticed many in the NF community who now have weird neurological symptoms and sensations, and they’re trying to find a correlation with NF. I’m not certain they will.
It’s a precarious situation, and everyone who is in their own lane, have passionate positions behind their beliefs. It’s a complex little web of torment and division that our government has woven into society, make no mistake.
I CHOOSE TO LIVE ABOVE FEAR, NOT BENEATH IT.
I have zero idea what lies ahead of me the rest of the day, tomorrow, or next week – none of us do. But I do know this, we are at a time in our lives where being strong and fearless is needed more than ever. The good guys are being forced to take a back seat to the driver of the corruption car, and then irrevocably silenced by means of threat and fear.
THIS WARRIOR IS TIRED OF IT.
Every day that I’m able to, I’ll stand up to fear, tyranny and the irrevocable danger that lurks around every corner. We may live in a fallen world, but you do not need to fall with it. Stand and conquer. Make a will and make a way. Fight until you can’t fight any longer.
Be the warrior that God made you to be!
He knew you could carry what you’re carrying…. so carry it. And carry it well, soldier.