One Year cancerversary

Well, one year ago today, I was diagnosed with brain cancer. I'm still here, still mostly me, minus a few bones and plus a few extra scars. When it comes down to it, I don't want to celebrate this as some special milestone; I just want to say that inertia keeps me going, and as long as I can keep on going, I will keep on going.

As a young kid, I remember taking a special test, and in the 3rd grade I was moved to the Gifted class. I was proud of being a smart kid. I loved to read (still do) but for me, for most of my life, my proudest asset was my intelligence, my logic, my rationality. Life played a dirty trick on me by letting this happen, and it just wasn't fair. I felt betrayed, lost.

I was afraid.

But it wasn't just the cancer, I was afraid of losing myself. I begged my Rockstar Neurosurgeon not to make me stupid. I was so scared to wake up from actual literal brain surgery having forgotten how to read, how to spell, how to write.

Would I even know if that part of me was erased? Who would I be without that part of me? My Rockstar Neurosurgeon is a true Rockstar, and I came out of that first (of multiple) brain surgeries with very little in the way of deficits. My reading speed slowed down, but otherwise I was okay.

Since then I've had radiation beamed directly into my head, three different kinds of chemo, three brain surgeries, countless MRIs, finding more tumors, and the never-ending isolation of Covid quarantine. But after a year of all of this, I am doing okay. As okay as I can be with cancer.

Yeah, I have cancer, but I'm not helpless, and I'm not dying yet. I spent a lot of time thinking about my inevitable mortality, staring at that bus. It took me a long time, but I am finally able to stop thinking about it, at least for days or even weeks at a time. It's not about dying of cancer any more. For now, I choose to mark this milestone by living with cancer. No cakes or parties because I don't want your germs, but I won't say no to a few more penpals, and if you would like to donate I still have that Gofundme, Amazon wish list, Cashapp, stuff like that. Do you know how much it costs to keep up with prescription copays?It's a LOT

My family and friends who have been here for me, thank you for all of your love and support. It means more to us than you could possibly know.

Ok, ready to hear the original poem of the day?

Things they don’t tell you about cancer:

It is lonely

It is frightening

Everything hurts

The chemo isn’t even the worst part

Well, sometimes, it is

There is so much to keep track of

Like a full-time job

Flu season is scary

Covid quarantine is pants-shittingly terrifying

You can’t hug every friend or family member you see

No matter how much a good strong embrace would help

It is too dangerous

Besides

Your skin will hurt

Your stomach will hurt

Even hugging your dog will hurt

there is so much fear

Is this a normal cancer symptom?

When should I worry?

When should I just take a valium and go to sleep?

How to turn off the loop in my head?

Cancer cancer cancer

Cancer cancer cancer

Eat dream and breathe cancer

It erases who you were

A professional

A friend

A sister

A daughter

Instead you become the diagnosis

Cancer cancer cancer

A reader

A writer

A mentor

Cancer cancer cancer

Consuming you

Destroying you

Shredding you to bits

Tearing away all of your softest spots

Leaving you with only the hardest pieces

Cancer cancer cancer

It leaves you with nothing but stone

They don’t tell you that you will have to be stronger than you have ever been

That the scars will harden you

Preparing you for the fight of your literal life

It will be quiet

Whispers and murmured euphemisms

So many prayers and thoughts

Overflowing good vibes and warm fuzzies

They won’t tell you any of these things.

-         11 June 2020

That's my stuff for today. I hope you have a good day. Love you guys!

Cancer Update

Yep, still have cancer.

I told you before that I was getting a port. That dealy-bob is in place, and itching like a mofo. I've started the new treatment protocol, which involves a chemo and a non-chemo medicine. The chemo SUUUUUUUUUUUCKS. The non-chemo is kind of okay, I guess, all things considered.

Side effects of all of the above include fatigue (ha!) nausea, and other things I don't want to talk about because of the sheer unpleasantness.

This means I've been sleeping a LOT.

I'm still doing my writing group; keep an eye out, I'll continue to occasionally post my super-cool super-angsty poetry.

Oh, while I'm here, I am pretty sure I've not mentioned this here before: Say hello to the seizures I've had:

They are super mild, and not very frequent. As best we can tell, I've had three in the last four months. I'm not what one might call epileptic, but it turns out that when some Rockstar Neurosurgeon digs around in your brains enough times, the result might be occasional short circuits in your wiring. We told the Rockstar Neurosurgeon about my symptoms, and he said that sounds like it was probably a seizure. I've not had one in the presence of a medical person, so The Husband has been the only one to witness what happens. At this point, it's a best guess diagnosis until it happens in front of someone medical.

Anyway, if it's not one thing, it's another.

I've been struggling with the inspiration for this blog. Maybe next time I'll write about my most recent favorite movie [spoiler: it's Troop Zero].

ImPORTant news

So, cancer update.

I still have cancer. Go figure.

Let's go in order:

• first I had a headache
• then it was a mass
• then I had surgery #1
• Diagnosis Day was the absolute worst
• Then I started phase 1 of standard treatment, but there was a problem

I had an infection, and needed surgery #2 to clean it out.

Back to the list:

• I started round 1 of chemo and radiation
• I finished round 1 of chemo and radiation
• I had a brain scan
• I started round 2 of chemo, phase 2 of standard treatment
• I had another brain scan

Chemo wasn't working, I needed surgery #3. Back to the list again:

• I had another brain scan
• My awesome oncologist decided I need to start phase 3 of standard treatment, which involves both chemo and a non-chemo medicine
• The non-chemo medicine is an infusion, which means that I need a port, which means that tomorrow is surgery #4. 

That's it. I think? That's a lot. Anyway, don't be mad you just found out today, because I just found out today that I'm having that surgery tomorrow. I guess that gives me less time to freak out. Not too happy that The Husband will have to wait in the parking lot, but it's an outpatient procedure, so he'll bring me home tomorrow afternoon, and hopefully I'll be doped to the gills.

Cancer sucks.

Surprise! Surgery!

Well, I hate to surprise you like this, but this goat rodeo got dropped on us with very little notice.

So, as you read this, I am having my THIRD surgery in 8 months. Surprise!

I've had multiple scans, both MRI and CT, in the last couple of months, and what appeared to be a spot may actually be tumor. My Rockstar Neurosurgeon is cutting the thing out. Due to a series of unexpected scheduling obstacles, we did not have much notice about this surgery.

So, as of right now, all I know is that I'll be in recovery for a few days before I'm released from the hospital. I will update as much as I can, but please be patient. It will be a loooong day, and I will post an update as soon as I am able to. In the meantime, please be mindful that The Husband has to go through the stress of waiting for me to get put back together like Humpty Dumpty, so he will not be able to personally update every person who calls or texts.

Also, as it is still flu season, it is unlikely that I will take visitors. This includes in the hospital and once I am home, at least until the surgical wound is healed.

The Husband will be taking care of me, like he always does, because he is awesome.

I know that many of you will ask what you can do to help. Right now, because we haven't met our out of pocket max, this surgery will cost a few grand, I'm guessing. To put it bluntly, if you want to help, you can donate through my GoFundMe, CashApp, or a good old-fashioned check in the mail. I hate to put it like that, but we are still working on paying down the last three hospital stays.

Well, I've never been to a goat rodeo. This will be awesome. Right?