And the winner is…

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brain mass

…mulishness! I think. Like so many of you on this cancer roller coaster, it is hard for me to get definitive answers. But. It’s looking like at least part of my theory is correct… that it’s not cancer that keeps creating masses in my brain. At least my latest brain mass isn’t.

If this post isn’t making any sense to you, you may not have read the last post, Miracles, magic, metastases, marijuana, meditation, meningitis, manifestation, and mulishness. I recommend going back to read it because there are lessons here for all of us in our healing journeys. 

As I’ve outlined, I’ve had now 12 ‘diagnosed brain tumors’ to date, 8 of them leptomeningeal. First, in 2014, I had 9, meditated and ingested high dose, high-quality CBD and 4 disappeared, making me eligible for targeted radiation on the remaining 5. So, Cannabis and I are miracle workers, right? Then October 2019, they found a large central mass in the control center of my brain, it was a dire prognosis of imminent doom and I tripled my daily dose of THC/CBD and meditated (I “blew it up” with a mental firecracker) and 2.5 months later, it was gone without a trace. Damn, I’m good, right? So, it stays gone for a year and a half, then reappears as two smaller tumors in the same spot. What the heck kind of brain tumor acts like that?

So, I got busy researching, came up with an alternate hypothesis, worked with a doctor who didn’t think I was crazy, and I appear to have prevailed. On Monday, I had an MRS, spectroscopy being the key word… it analyzes the nature of the brain mass. It didn’t tell me what exactly IS the nature of the mass but did deliver the proclamation… “not consistent with malignancy.” AND… the mass is now only one small one, basically half the size. Wondering if maybe the fact that the mass isn’t completely gone means that my meningitis theory isn’t correct? But in 2019, it was 2.5 months later that we knew the mass was gone. This has been only a month… Maybe if I continue my protocol (which includes Cannabis because it treats my meningitis successfully, which explains why it played a role in the previous masses disappearing) for another month, it will disappear completely. 

In case you want to compare last week’s post which included my scan from early July, here’s last weeks…

8/2/21 brain mass

8/2/21 Brain mass

And here’s last month’s…

Brain mass

7/5/21 2 brain masses

It’s hard to tell from this view (last week’s post has a view that shows the “binary star system”), but it’s now actually one 6mm mass instead of two 7mm and 8mm masses…

 

 

Either way… brain mass apparently isn’t cancer, which is HUGE. So, most likely, NONE of my brain masses have been cancer. And I had radiation on five of them leaving me with scar tissue the size of the masses they replaced. Probably, unnecessarily. All because my doctors at the time refused to think outside the box. True, I had tumors on every vertebrae, crushing seven of them, so it was a logical conclusion, but three different spinal taps did not yield cancer cells on slides. No biopsies were done. And now, my radiation oncologist, who would be the one blasting away, thinks I’m brilliant, and that I just saved myself unnecessary radiation and scar tissue in an area of the brain that could precipitate Parkinson’s or worse, permanent motor damage.

Even now, my medical oncologist doesn’t believe me that I have been battling Mollaret’s Meningitis for 40 years because a doctor didn’t diagnose it and I haven’t died from it and his experience as an intern (!)  was that people with meningitis die. That’s because doctors have been entirely useless in that regard. I almost died from it… twice. So, I researched it and  diagnosed it myself and learned how to treat it and stave off attacks before they require hospitalization myself… for 40 years! Hell, even Wikipedia will tell you that people with Mollaret’s rarely die. But do I get even enough credibility for him to Google it himself? Or consult his medical books and journals. Hell no… he wants to blast me with chemo.. even now when the Spectroscopy says its not cancer!

Who would YOU go with? The one who thinks you’re a quack and stays stuck in his med school rut and wants to give you unnecessary carcinogenic poison? Or the one who thinks you’re brilliant and wants to spare your brain if there’s any chance?

So, what are the lessons I wish to impart?

  • No one will care more about your survival than you. You need to be your own advocate, believe in yourself, and take charge of your healing journey.
  • “They have a body of knowledge. You have knowledge of your body.” – Christianne Northrup, MD. Listen to your gut, talk to your body, follow your intuition, stick to your guns.
  • Do whatever research you can about your particular situation. Think outside the box. If you’ve read any of my books, it is clear that I have a peculiar medical history. But, you know what? We ALL have our medical peculiarities. It’s best that you know as much as possible about yours.
  • I believe in you nd your ability to heal. Never forget that. 

So, I hope my latest odyssey has been helpful to you. Please remember that, as part of my Thrive Tribe, I am here for you, and you may feel free to contact me for inspiration or information so you don’t just go off and die because someone in a white coat said you would.

You can and will prevail. Make it so. Love you all. 

Miracles, magic, metastases, marijuana, meditation, meningitis, manifestation, and mulishness.

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Theres something about alliteration that brings me joy. Thank you for indulging me. 

I’ve defied three different prognoses of imminent doom. It’s tempting to interpret my current situation as heading for a fourth. But at this point, I’m kinda over it… been there, done that. I’ve decided to explore another possibility… that a couple of my past ‘successes’ and my current situation of not one, but two, new brain metastases, or ‘tumors’… are not what they seem. If my new theory, rooted perhaps simply in denial, is true, then I am not the miraculous wonder I appear to be. I’m just a function of a strange medical history.

So, in entertaining this new theory, I throw myself off of and dismantle my pedestal of miracle worker. But I do it for the purpose of building a new one to encourage you all to be as stubborn and determined as me, because if I’m right, those qualities will save me and will likely save you. Confused? Intrigued? Bear with me, there’s some history to cover…

But first, i pose the question… what kind of brain tumor manifests as a single 1.3 cm mass, disappears completely for a year and a half (as documented in three brain MRIs), then reappears as two tumors, 7mm and 8mm? Maybe it isn’t actually cancer? I mean, I’ve never had a biopsy and three different lumbar punctures did not find cancer cells in my CSF. I had this theory before but doctors always said, “if you hear hoofbeats, think horses, not zebras… you have metastatic HER2+ breast cancer with a history of spinal metastases, it looks like cancer and really cant be anything else.” But now, with this very non-typical manifestation, I found a doctor who thinks there might be something to my theory that it is chronic viral meningitis, and not cancer metastases, in my brain.

My medical oncologist thinks i’m a quack and wants to put me on chemo right away. My radiation oncologist, who has backed my wild theories that turned out to be right in the past, thinks I could be brilliant and offers an interesting experiment.

For 40 years, I have struggled with chronic viral meningitis. Ive been hospitalized twice with it and almost died both times and western medicine has been useless in diagnosing and treating it. But I did my research, figured out I have Mollaret’s Meningitis, and how to treat it. I found out it is a virus that lives in the spine and comes out in times of stress. I can feel an attack coming on with stabbing pains running down the backs of my legs and if I destress and meditate, and stop eating nuts, that can sometimes be enough. 

See, it’s part of the Herpes virus family and all of those can be affected by the amino acids Arginine and Lysine, which coexist in an inverse ratio (If your Arginine is high, your Lysine is low and vice versa). Turns out nuts are high in Arginine and can precipitate an attack of shingles, cold sores, meningitis, etc. I once gave myself an attack before I discovered this by eating an entire can of cocktail peanuts when I was starving and that’s all I had to eat. So, I can stop eating nuts and take supplemental Lysine to stave off an attack as well. Also, since it is a virus, Acyclovir can work to make it go away. 

So, another interesting factor to add into this situation is that I successfully treated my meningitis by accident with Cannabis. The reason this is relevant is that when I was diagnosed with 9 leptomeningeal brain metastases in 2014 and 4 of them miraculously disappeared with out a trace, I attributed it to the fact that I took very large doses of CBD oil. Another interesting thing is that since then, I take cannabis oil every night before bed and I have never had a meningitis attack since then except for the story I outline above when I had no cannabis oil for a month and had a meningitis attack. Another interesting thing is that I did just have an attack try to start up two days before I had this recent brain MRI that identified two metastases. 

Brain Metastases Then…

So, maybe these masses aren’t brain metastases at all… maybe they are viral clusters getting activated for whatever reason? See, in October 2019, I was diagnosed with this large central tumor in my basal ganglia/thalamus area of my brain. I was living in Puerto Rico and they sent me back to the mainland because it was too dangerous to treat there. See how the white mass is closing off the dark ‘butterfly’? 

brain tumor

The 1.3 cm tumor in my basal ganglia/thalamus Oct. 2019

no brain tumor

Gone! January 2020

Those are the ventricles and if the tumor was to grow and close them off, my brain would herniate and I could die instantly. I said, I can’t go to the States until I get new insurance… I need to wait until January 1, They said, you won’t be alive in 2 and half months, you can’t wait. But I had to, so I took it upon myself to get rid of it myself. I tripled my dose of cannabis oil, had the beginnings of my theory, and so also took Acyclovir and Lysine. I did intensive meditation where I ‘blew up the tumor with a firecracker’. And when I landed January 1, the brain MRI was clear… it had ‘magically disappeared’ and the butterfly is back!

 

two tumors

Two tumors appear to take the place of the one that disappeared. July 2021

Brain Metastases Now…

I had three subsequent MRIs over the next year and a half… all clear and then a month ago, two days after my meningitis tried to launch an attack, an MRI showed two 7-8 mm ‘tumors’ occupying the same space.

 

 

 

 

 

An Alternate Reality?…

Now when I had this theory in Puerto Rico, they all thought I was crazy. I researched and found brain MRI images of people with chronic viral meningitis that has not only the edema that looked like mine but also more contained masses. 

my edema

Here’s the edema from my Oct 2019 ‘tumor’.

meningitis edema

Edema shown in scan from a meningitis patient.

Meningitis 'tumor"

Here’s a scan of a meningitis patient with a mass that looks a lot like my ‘tumor’.

 

 

 

 

 

 

 

 

They still thought I was crazy. But I showed them this round to my radiation oncologist and he agreed that this wasn’t acting like brain metastases. And that maybe my theory had merit.

So, I’m going to do all the things I did in Puerto Rico… meditation, cannabis, Acyclovir, Lysine, and we’ll scan again in a month. This time we will do an MRS (Spectroscopy, which can analyze the chemical make up of the mass) instead of an MRI. It won’t be able to tell me if it is a virus, but it might tell us if it is consistent with being a tumor or not. Or, hopefully, it will be gone completely again!

Whaddya think?

Wanna place a bet? Im getting my MRS on Monday. If my theory is right, then I am not really in the danger they think I am. But it also means I am not as cool as I have pretended to be either, in that I didn’t ‘meditate cancerous tumors away’. But it does explain the healing role of Cannabis. Just not that it destroyed cancerous tumors, rather that it treated viral masses. If you have read either of my books, in the chapter on ‘Miraculous Healing’, I did meditate away a golf-ball sized tumor in my clavicular lymph node in real time. And I still survived against all odds from a tremendous systemic tumor burden on my lungs, liver, lymph, spine, and pelvis (so I’m still ‘miraculous’ LOL).

And, one could argue, if I’m right, I’m cool on a completely different level… I will have stubbornly refused to succumb, done my own research, and figured out how to save my own damn life…without chemo or radiation. See, I did have SRS to zap the 5 remaining ‘tumors’ in 2014 and it left me with scar tissue. This scar tissue makes them freak out every time, telling me they are brain metastases. Perhaps the SRS was unnecessary? And to treat this new mass in my basal ganglia with radiation, I risk scar tissue that could cause real problems such as Parkinson’s. Again, medical doctors aren’t telling me this, I had to do my own research.

They moved my MRS up two weeks because I’ve been losing my balance and falling a lot lately. I’ve always been clumsy. The difference now is that when I start to fall, I tell my brain to catch myself, it doesn’t listen, and I fall flat on my face. People have to help me up and it’s super embarrassing. But also worrisome, since its the first time I’ve had brain symptoms. Thing is, meningitis cam cause the same symptoms. That’s the scenario I’m rooting for, even if it somewhat diminishes my magical status. You’’ll still love me either way, right?

Drum roll, please…

Continued in And the winner is…

 

Disclaimer: Nothing contained on this website should be construed as medical advice. I am not a doctor. I am a Stage IV breast cancer thriver who is currently NEAD and simply sharing what I did, and do, and why. Please research anything I share to determine if it is a good path for you. Bless you all on the path you choose.

All original content contained on this web site, kaiulanifacciani.com, is copyrighted, 2015, 2016, 2017, 2018, 2019, 2020, 2021, 2022. Kaiulani Facciani and Snarling Wolf, Inc.