Brain Surgery-Versary

Content warning: You might want to skip parts of this if you're squeamish.

I had brain surgery four years ago today. At this time, in fact, I'm guessing Marvin was already out and they were making sure they got all of it, or maybe they were working on making sure my brain wasn't bleeding, or that my body didn't go into shock from the drastic and immediate reduction in intracranial pressure, or that my brains weren't going to leak out my ears or something. (I'm pretty sure that'd been happening, though, before surgery for a couple of years. Bleeding sometimes out of my left ear, I'm pretty sure, was a symptom that I was experiencing because it mysteriously disappeared after my surgery.)

Or maybe they were putting on the titanium mesh or closing up the dura or something. Want to see what it looks like? This is my actual skull. So fucking cool. The stuff that looks like weird amoebas is actually mesh because they couldn't reattach my skull in those areas. Marvin was one hungry bitch.

I like to think about the whole procedure. Yes I watched a video of one. It was literally one of the most fascinating things I've ever watched. I've watched one of all three of my surgeries in 2021. 

DID YOU KNOW THAT WHEN YOU GET A LAPAROSCOPIC HYSTERECTOMY, THEY HAVE YOU PRACTICALLY HANGING UPSIDE DOWN? YOUR LEGS ARE ALL THE WAY UP IN THE AIR.

DID YOU ALSO KNOW THAT WHEN THEY REMOVE YOUR THYROID, THEY HAVE YOUR HEAD LITERALLY HANGING BACKWARD OFF THE TABLE IN WHAT'S CALLED A ROSE POSITION? (No wonder my neck hurt for like four days after that one.)

It's also difficult to think that my head was held in this for upwards of 12 hours, but also I wouldn't want my head flopping around either, so I guess it's fine. 

(It's called a Mayfield Skull Clamp. You're welcome.)

This year has been better than the previous three to be sure, but not without frustrations. My primary one?

Marking this anniversary, even in my brain. Memories of it can't pass through my nervous system yet, which tells me that I have a lot of work to do still on the trauma recovery side of things. But I've been here before, and I know that there's a way out. I just have to take the way through the trauma and I don't like it. I want it to just be another day on the calendar and the fact that it's not is unendingly frustrating for me. 

But one of my internal rules is that if I am to see the frustrating side, I also have to see the good part, which is that my 2021 nightmare was over as of 1,461 days ago. I woke up from surgery without a headache that I didn't even know I'd had for twenty entire years.

I no longer had to live in fear that I was going to have a seizure or some other medical event and hurt someone else. And boy was I afraid. There were things like "If you don't do this surgery sooner rather than later, we're going to have to seriously explore you giving up your driver's license until you have it" being thrown around.

Also, I woke up no longer having a brain tumor and I'm pretty sure I still don't as of now (I'll know for sure in March), so that's something. Also every year that passes, my chance of recurrence decreases. I'll be considered out of the woods at the 10 year mark, but next year is also a really big milestone. They may move me to MRIs every 18 months after my next one, so that's also really something.

I also can't not look at the gains I've made, especially this year. My cognitive function is better, even if it's not 100%. My executive function is better, even if it's not 100%. My energy is better. Also, quite frankly and most importantly, so is my will to live. That might sound strange, but it's where I am. At my lowest points of this journey, I'm not afraid to say out loud there were times that I was mad, like truly angry that I survived. (I don't feel this way anymore, not even close. Actually, the exposure therapy that I did earlier this year helped this part more than anything.) I thought I was going to be that low-functioning forever, and I didn't want to live that way. No matter how much my medical team tried to reassure me, I didn't believe them because I wasn't getting any better. I am not sure I can describe the helplessness of waking up one morning with drastically lower cognitive functioning, knowing it, and not being able to do anything about it. I hope I never have to feel that level of frustration again.

I can't remember when things started to turn, but it was, without a doubt, this year. Maybe it was functional medicine. Maybe it was changing my diet. Maybe it was going on Zepbound, which had a drastic and overnight impact on the level of inflammation in my body, and I'm guessing, my brain. Things just started to feel easier.

Do my frustrations around my cognitive function continue? Absolutely. But they're far, far fewer than they were even this time last year, so growth and recovery are happening actively and noticeably. I've also learned a lot of things about myself, the things I value, and how I want to lead my life in a way that I wouldn't have considered otherwise.

Am I delusional enough to say that my brain tumor was a blessing? Absolutely not. All things being equal, NOT going through that would have been the optimal scenario. But as strange as it sounds, I needed to find the fragility in my life, because it existed whether I acknowledged it or not. It allowed me to acknowledge that I'm a medically fragile human, and so are all of us to a degree. We just realize it at different times of our lives.

There's a lot of hope to be had, which feels nice. I'm starting to get back to my old self, which also feels nice. The best thing I can do for myself is keep going and remember that putting one foot in front of the other is healing, too.

Bone Loss PSA

Here's the great thing no one tells you about yeeting your reproductive organs and your thyroid. See also: Going through menopause.

Well. They tell you. But they don't, like, make a big deal about it.

I'm at high risk for bone loss. My doctor literally told me that with a shrug and said, "No big deal. We'll just do bone scans every two years." I have osteopenia in one of my hips, but it's more of a "Watch and wait" scenario, so nothing to be done about it. I'm not in any kind of pain, I'm not worried about it. I mainline vitamin D every morning and move on with my life.

You know what bone scans don't look at, or at least don't pay much attention to?

Your feet.

Your hands.

Your toes.

Your fingers.

Really anything below the elbows or the knees that isn't a major joint, doesn't get all that thorough of a look. However, in doing some digging, those places are where bone loss is most likely to show up first.

They're concerned about bone loss in the hips, pelvis, ribs, and spine, which I get. Those things breaking sounds unbelievably painful and have a bigger impact on quality of life than, say, your pinky toe. I just wish I had known that before I started agreeing to them so that I could advocate for my whole skeleton to be scanned, because there's absolutely a way to do that.

So two years ago, when I was catapulted off of my front steps by my dog and broke my hand instead of breaking my face, there might have been a reason for that.

Or, the other day when I had a knitting-related accident (and I 100% am sticking to that story simply because it sounds hilarious and is simultaneously true), maybe under different circumstances, my foot wouldn't have broken. But the circumstances are what they are, so I hobble in a boot for the next two weeks. Thankfully it's just a chip off of the outer bone, but it's painful and annoying. 

So, if you're a human who has lost hormone-producing organs in a surgical manner, or if you are going through perimenopause or menopause, ask about bone health at your physical. Just do it.

Also, do strength training. I've now heard from three different medical professionals in the last six months that strength training is the key to bone strength. That's the blessing in all of this, if there is one to be had - now I get to get jacked because I can't currently walk very far. So, strength training it is.