... I sang for the last time. 🎶💔🎶
"Lost" by Linkin Park
As I sang and held that last note, I could physically feel a part of my heart break off, and in my mind's eye, I literally saw it disintegrate into dust and drift ethereally away from me into the void.
A sobbing cry of pain escaped my lips as though I had been punched in the gut.
Singing is my greatest passion.
My talent.
My outlet.
My grounding.
My soothing.
My empowering.
My healing.
I have stage 4A tongue cancer.
- among many other health conditions -
I've been battling for my life since I was diagnosed with cancer back in September 2022.
This year,
I've undergone 35 rounds of Radiation Therapy,
and 5 rounds of Chemotherapy.
Surgery would have been ideal, but unfortunately it wasn't an option for multiple reasons.
I've almost died more than once.
My husband has PTSD from trying to wake me up and genuinely believing that I was dead when he legitimately could not wake me.
More than once.
The nightmares and the flashbacks of those moments absolutely cripple him. 💔
~~~~~~~~~~~~~
My physical pain (and the swelling) has been ridiculous...
In the beginning, my care team explained that I would need heavy pain medications throughout treatment.
I told them that I have a pretty high tolerance for pain, and they were like,
"No one makes it past 3 weeks without needing narcotics."
I shrugged, saying that if I need them, I'll take them.
After multiple weeks (4 or 5) of treatment, my radiation oncologist was using her fingers to inspect and press in my mouth full of blisters (this inspection was routine), and she was talking about how weird it was that I wasn't taking any pain medication, because it should be painful.
I shrugged and told her it's not comfortable, but I can tolerate it. It doesn't really rank as pain to me (since I've had so much worse, chronically).
I reminded her that I have a weirdly high pain tolerance, and she suddenly got very loud, saying,
"YEAH! IT'S WEIRD!"
We all paused and then laughed 😅
(my husband was in the room with us).
It wasn't until a day or two after treatment was finished, that the pain kicked into high gear for me.
I needed heavy narcotics for about a week.
My doctor was practically excited to give them to me, like, "Yes! Finally! Here!"
Then I thought I was getting better.
I wasn't taking anything for the pain.
The tumor on my tongue was gone, and all that was left was the same unhealed ulcer that started this whole thing.
But it wasn't getting worse, and since I have a rare connective tissue disorder (EDS), very slow healing was expected.
I let myself feel good.
I let myself believe I did it; I kicked cancer's ass.
I beat it. It's over.
I felt hopeful for the future again.
I felt strong. 💪
After a few weeks of feeling really good for the first time in over a year, the pain suddenly came back with a vengeance.
Almost unbearably.
And the ulcer started spreading.
And I just knew. 💔
I also had hair loss that wouldn't stop
(a recurring nightmare that I've had my entire life),
so I took control-- and after having natural mermaid waved hair down to my butt for over a decade and a half, I shaved my head.
I've also been dealing with this pain so deeply for these last few weeks that I don't get more than a couple of hours of sleep at a time because it wakes me up,
and I haven't been able to eat more than a couple hundred calories a day, because now I'm having trouble with the mechanics of swallowing.
... I can't rest or get nutrients, so how the hell am I supposed to heal?!
The ulcer in the side of my tongue that refuses to heal now has a "crater" eroding into my tongue.
Recently, my surgical oncologist gently informed me that this is how patients pass away from this cancer.
The crater burrows deeper until it eventually hits a main vein in my tongue and I'll bleed out very quickly.
Surgery is now our only option if I want to survive this.
Her words.
So I'm scheduled for a partial glossectomy, which is doctor speak for removing a good portion of my tongue.
I'll be able to speak again after, with time and training, but I'll always speak "funny", and sometimes people may have difficulty understanding me.
But singing?
...That, I'll never be able to do again. 💔
~~~~~~~~~~~~~
I was in the excruciating pain driving home in my car last night for many hours with my music on, and I couldn't sing along because of the pain.
... I remember thinking that it was already over, and I was feeling absolutely defeated.
I could feel the depression creeping in, and I felt the knot in my throat form; simply wanting to cry.
Just then, I heard the instrumental of the intro to the song Lost by Linkin Park begin.
I almost cried for another reason.
Instead, I smiled, and I sang that song with everything I had in me. I put all of my passion into it, fueled even further by my extreme physiological pain, and sang and screamed along with Chester.
It was my goodbye to that part of myself-- the part of me who's survived all these years through so much trauma and was strong and empowered by my voice, and I gave it absolutely everything I had--
physically, mentally, emotionally, and spiritually.
And as I sang and held that last note, I could physically feel a part of my heart break off, and in my mind's eye, I literally saw it disintegrate into dust and drift ethereally away from me into the void.
A sobbing cry of pain escaped my lips as though I had been punched in the gut.
~~~~~~~~~~~~~
🎶 Thank you, Chester, for saving my life so many times when I was younger, and periodically throughout my life.
For being there for my daughter as well, while she was growing up.
For having a raw passion that we could share and feel with you.
Thank you, Chester, for saving me again while I was going through my radiation treatments...
During all 35 rounds, they played your voice through the loud speakers to ground me and to soothe me.
Thank you, Chester, for last night.
For the song that you created and Linkin Park released after your passing.
For allowing me to share in your passion one last time, before it was Lost to me forever. 🎶
~~~~~~~~~~~~~
❤️🩹 Radical acceptance.
Closure. ❤️🩹
Now to start the next leg of my journey.
It's terrifying... I hate the unknown.
But I'll survive, because I'll
Always Keep Fighting.
🖤❤️🩹🖤
