8 mm of to be or not to be

back in the not knowing

Hi lovelies.

This update is very overdue and there's reasons.

I'll get there, apologies.

I'm gonna try to stop making the same mistakes real soon, I promise.

♤

In case you're new to this corner of Substack, I'm a homeless single mother living in a broke down RV next to my father’s house with my disabled son and barely adult daughter on the run from an abusive marriage, and last October I was diagnosed with stage 4 cirrhosis.

Eventually this will kill me without a liver transplant.

♤

I'm breaking the newest literary blasphemy, writing about oneself, because if my life is going to be this interesting against my consent I may as well get something out of it, even if it's never anything more than screaming into the void.

That's still something.

More to the point, I'm writing to give the dying a voice. Our society is rife with unwritten rules created to force terminal suffering into silence.

I won't let people grieve me before I'm gone.

If I'm going to die, my last days are going to be an adventure, not an exercise in bereavement.

But I'm maybe not going to die so soon? It's all very complicated. I'll get there.

You can find further context in my ill advised confessional, and then this update featuring hepatic encephalopathy. If that diagnosis sounds kind of ominous, please congratulate yourself for the keen instincts.

It is, in fact, very fucking ominous.

But ominous is where we live now.

♤

Brief recap,

at the end of March I went to the hepatology clinic where I was given a MELD score (7) and confirmation that a liver transplant is inevitable if I want to live long enough to get an AARP card. I left with samples of Rifaximin, a medication that treats Hepatic Encephalopathy (HE), the result of toxin build up in the brain. It’s a sign that my body is heading towards decompensation.

This leads to zombie mode; chronic acute fatigue, inability to focus, severe brain fog, losing time, etc. You know, all the symptoms of every other mental health disorder. The presentation and severity is much different, but there's just no way to explain that to folks who are determined to call it ADHD or dissociation.

We're thinking I was at early stage 3 HE when I finally started treatment.

After I finally picked up the two week trial it took almost a month to get the medication approved by insurance and filled at pharmacy, and during that time the symptoms returned with a vengeance with a new one making life unbearable;

Apathy.

I just couldn't summon the will to give a fuck about anything.

"Reaching for joy" meant nothing.

Eating was a waste of energy.

Taking any medication seemed unnecessary.

And all the while my obnoxiously keen sense of self awareness was screaming from the back of my mind that none of this was normal or acceptable, for all the good it did my deteriorating executive functions.

It's not a state I ever want to experience again.

But I probably will. It's a known symptom of HE, and this doesn’t go away. It’s here until my a liver hits or my body quits.

And that's okay.

I'll be ready next time.

♤

On May 23rd I finally got my hands on the prescription, and the difference has been profound.

If you're one of the chosen ones who manages to raw dog reality without any chemical interference; please don't tell me where you live, I might turn psychotic again and there's just no telling how that will go, I've never been a stalker before but I've also never had brain damage before so JUST TO BE SAFE-

sorry.

cheers to the raw dogs.

no fucking clue how you do it.

There's a lot surrounding HE that I want to talk about but this update is only about half finished so I've decided just now that I'm going to use prompts from the POV workshop to work through a lot of it.

For now, the only thing I can imagine that comes close is something I've heard called "ego death", except I never had much ego and most of it died before my liver.

But life is different.

My brain is different.

And hell hath no fury.

But still, we smile.

The live laugh love is locked and loaded.

♤

On May 6th I got the ultrasound done that should have been completed with my appointment in March but bitches be crazy and I got lost at the medical complex that thinks it's an airport.

Last year my liver measured 28 cm, but that was when I still actively drank and ate gluten. Having cut out those two factors the swelling decreased significantly and we're now at 21 cm!

Yay good news!

And now we can see things!

Enter: the bad news!

Now that they can see my liver clearly, a little bitty .8 cm mass has appeared.

Because life wasn't exciting enough already.

Most liver cancer occurs in patients with cirrhosis.

It's called hepatocellular cancer, and it's one of the cancers that makes oncologist curse under their breath because there is no cure. It's one of the deadlier forms of cancer, treatment involves a liver transplant or life prolonging drugs and hospice.

Because it's usually caught in the later stages, it's almost always fatal, with a 5 year mortality rate of 20%.

Thankfully, if it's cancer, we managed to catch it in the early stages. I won't even qualify for transplant candidacy until it's 2cm, so they would just re-image in 3 months anyway.

So we're skipping to that step.

Because cirrhotic livers are ugly and complicated!

So it might not be cancer!

Wouldn't that be swell!

But we won't have an answer until the beginning of August.

So we're back in the not knowing.

Fun times.

At least my MELD score is still low; we’re at a 9.

♤

One way or the other, I have to move before the next school year starts. Or at least shortly after so my son can start school somewhere, that's where he gets the bulk of his services.

Things get complicated when we take into account my son.

In order to qualify for a transplant you have to be at the edge of death and/or meet a long list of requirements before getting approved for candidacy.

One of those requirements involves aftercare.

You need to have someone committed to being your in home help for at least 3-6 months post transplant, with the first month being 24/7 care.

I could find someone to take care of me.

But taking care of a nonverbal OCD/ASD 10 year old who won't get in a car unless he can glide his hand up the side of the vehicle, peer inside the corner of the windshield, then glide his hand back down until he gets to the door handle? That's a lot to ask of someone who doesn't know him.

At this point, if something happened to me, his father would take custody.

I'd rather die.

..and I might!

HAH

(sorry)

The man has a temper and he’s selfish. He's made very little attempt to keep in contact with his son.

Not only is he incapable of caring for a disabled child on his own, if he gets custody my daughter will lose her connection to her brother.

She can't have her stepfather in her life anymore.

♤

I'm not ending this with profundity or a graceful closer.

It's dramatic enough on its own.

I'm waiting to find out if I have cancer and I have to move to a state that offers liver transplants with a community for my son and I, or face the propect of surrendering my son to my abuser.

It's gonna be a long year.

But I aim to make the most of it.