I saw a head and neck tumor specialist last week, and here is where I am at with the options regarding the unexpected guest in my head:

1. “Nonessential brain matter” could be leaking through a hole in my skull into my nose. This condition is called encephalocele. If that is what is going on, I was either born with it (more likely), or it could have happened when I was in a bad car accident eight years ago due to head trauma (less likely). If I was born with it, and this is what it is, it is a neural tube defect, which happens in the first month of pregnancy. Do you know how they tell women to take prenatal vitamins with lots of folic acid even if they are only thinking about getting pregnant? Yeah. That is the stuff that prevents neural tube defects. Encephalocele is type of neural tube defect, usually found at the back of the head, detected in infancy. The kind in the nose, discovered in adults, is rare.

If this is what I have, there is no real problem. It seems wild to say that brain leaking into my nose through a hole in my skull isn’t a problem, but apparently, “it happens,” says my surgeon and the thing to do, is “nothing.” I, of course, keep playing that over and over in my mind and laughing.  What the freaking heck? Ok. “It happens.”

If it is an encephalocele, they will monitor it and see if it grows. The problem that can come up with these is if spinal fluid starts leaking out of it—random water like gushes out of your nose. I haven’t had these yet.

The mass/”non essential brain matter” is blocking the left side of my nose, but that is it. I have been ok for this long. As long as the intense face pain I have been having has been caused solely by my teeth, this possibility seems to make complete sense to me. There may be some restrictions that I am sure I would get more information on if and once it is confirmed. Things like nothing aggressive up my nose (like a covid test, for example), no skydiving, things like that. As my surgeon said, it is “annoying, but not life-threatening.”

2. It could also be a ball of mucus that has been unable to drain for years due to a mucus seal. The pressure of this slow-growing ball would have thinned out/eroded the bone between my brain and my nose. This one seems very disgusting, and they didn’t mention how they would solve it, but I imagine it would be incredibly satisfying to have it removed. I already told my sister she could watch them remove it and take a video of the process if that is what it is. You are welcome in advance. Perhaps this will make me youtube famous. I will ask more questions about this exciting possibility at my next appointment.

3. The last possibility is that I have a tumor.

A.) It could be an aggressive skull-based cancer that made the hole in my head. Skull-based cancers are so vast and varied that they can’t know exactly what type it is without a biopsy.

B.) It could be a slowly growing, benign tumor that has made a hole in my skull slowly over time.

I need to wait for more information via MRI. If it’s clear it’s not the encephalocele (the leaky brain thing), then they will do a biopsy to see if it’s cancerous and what kind. The biopsy would be done under general anesthesia (aka they “put me to sleep”) to open up my sinuses and see what it is. They would do this through my nose—yay for not cutting into my face.

If it is still unclear after the MRI, if it is the leaky brain thing or not, they need to do more tests. I am not sure what kinds. They can’t do a biopsy until they know it is 100% for sure, not the brain leaking thing. If they cut into “nonessential brain matter,” the spinal fluid surrounding it is at risk of possible infection associated with a leak/opening to the outside world. Nobody wants a brain/spinal fluid infection. Pretty sure that goes real bad real fast.

If the mass is my brain matter leaking through the hole in my skull, like my surgeon is hoping for, the tissue might not be essential, but the fluid surrounding it connects to the rest of my brain and spine, which is, you know, is very essential, and we don’t want to put it at risk. So for now, we gather more information until we are sure.

So there you have it! I am at peace with all of the options.

I am proud to say I have lived my life like I am dying.

I have held my heart open every chance I got.

I have loved deeply.

I have been loved deeply.

I have been betrayed.

I have had my heartbroken. Again and again.

I have healed.

I am healing.

I have loved even bigger with better boundaries.

I have been bold.

Holy heck, have I been bold!

I have said the truth, even when it hurt and made me alone.

I have followed my wildest dreams- I’ve really gone for it.

I have backed myself time and time again.

I’ve gotten the haircut my ex told me would look bad on me.

I’ve taught hundreds and hundreds of women how to own their pleasure and express the parts of themselves they have been most ashamed of.

I have learned to be kind to myself.

I have learned to enjoy the parts of me I was told to be disgusted by. My fat, my body hair, my vulva.

I enjoy my own company immensely.

I have learned to make sex a moving art practice.

I feel deeply held, nourished, and stimulated by nature.

I know what I need to stay at peace.

And I’m doing that now.

I am protecting it fiercely.

 

Thank you for your understanding and your support. It’s beautiful, and I feel it.

The past two weeks have been a fast freaky whirlwind. It feels like it’s slowing down now, thank god. I have integrated the information a bit more. Things are happening as they should, and I trust my body.

I am so grateful for the people who have helped me connect with the best care possible; you know who you are.

This whole process has been a tremendous gift. Inner knowing and clarity have emerged. An intuitive thing I can not deny. You know when you flip a coin in the air, and all of a sudden, you see what you want as the coin is suspended? The deeper wish only emerges as you face losing it.

That is what this has been for me. Life has been tossed into the air; impermanence snapped into focus, and bam. My body knew.

When you see time and energy as a finite resource, you get fresh with what takes from you and what gives back. Some in big ways, but those I had already dealt with. It has been the tiny energetic leaks that have revealed themselves to me. These aren’t personal things. It’s where I feel like you can be yourself without effort.

Lots of people want to be that for me. I don’t take that for granted. And most of them just can’t. It doesn’t matter if they want me to feel good around them. Wanting isn’t enough. It just is, or it isn’t.

When you have a possible life-threatening situation, you stop staying in those places. You run for real comfort—the watertight, reliable, beyond-a-shadow-of-a-doubt kind.

It doesn’t make the other people bad. I don’t feel like I can be radically myself around lots of good, well-meaning people. People I have told myself I should feel comfortable around. Like the majority of my family, for example. People I have convinced myself I should feel at ease around, simply because we have both put in the time and love each other- friends, lovers, and colleagues alike. I got to honor that truth these past weeks.

I am willing to make others uncomfortable (in a whole new way) in the pursuit of protecting my peace. And I’m guessing those people don’t feel like they can be 100% themselves around me either. Walking away from those dynamics sets us both free. And I am no longer wasting time, waiting for those things to fizzle out on their own.

They might be hurt or angry at first.

They are allowed to have their feelings.

And those feelings are not mine to deal with.

Regardless of what happens with my health, there is no going back, and for that, I am grateful.

I shared this on Instagram the other day:

It resonated with so many of you. It has been one of my most shared posts ever. So I thought I would put it here in a more permanent place.

It is the essence of embodiment work (being in your body to be able to listen to what it needs and wants) and boundary work (being able to effectively communicate to assert your needs and preferences to those around you).

It has also been the hardest and most rewarding part of this “maybe I am dying” process for me.

What are some of the places or people you are betraying yourself for?

Don’t wait for an unexpected guest in your head to cut that crap.

Have your own back.

Be there for yourself first.

Do not betray yourself.

Prioritize yourself like you would if you were dying.

(Oh, and you are dying… just in case you forgot.)

Loving you from this wild, full-range, orgasmic life of mine,

Katrina Marie