💔 LOST ❤️‍🩹

December 26th 2023 at 6:03 pm

... 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.

            🖤❤️‍🩹🖤

Hospital Visit

I felt a sudden, excruciatingly familiar sharp pain in my gut. I called my doctor, and anxiety began to build inside me; I already knew what she was going to say.

I compartmentalized my anxiety, getting into a strictly factual mindset, preparing for what was to come.

As expected, my doctor told me I needed to go to the emergency room.

My anxiety controlled my physiological reactions, yet my mind stayed sharp and logical.

With my husband by my side, I could face anything.

We arrived at the hospital, and there was no one in the waiting room; it was very quiet. I was glad that at least they were not busy.

The check-in process was fairly straightforward. Weight, blood pressure, temperature, the routine questions of "what brings you in", etc.

I explained to the triage nurse the pain I was having, and that my doctor sent me. I explained that I had a recent history of ruptured ovarian cysts, the last time with ovarian torsion, and that this felt identical to those other times.

The triage nurse took note of everything, and escorted us back to the room where I would be seen by a doctor.

The triage nurse instructed me to remove my shirt and bra, and to put on the hospital gown.

I then sat on the narrow hospital bed, while my husband sat in the chair, and we waited.

It was so quiet.

After some time, a different nurse came in with the items for setting up an IV.

I looked at the nurse nervously and asked if it was necessary, since all I should have needed was an ultrasound.

The nurse simply stated that she had to.

Reluctantly, I explained to the nurse that my veins are very difficult. That even if the nurse tried, she may not succeed at getting blood out of me, let alone get a successful IV into me.

The nurse asked to try, and I agreed, hoping this time would be different.

It wasn't different.

The nurse apologized and said she'd send someone else.

Unease started to grow inside me, as I sat with my husband in the quiet hospital. He was so attentive and reassuring; it was the only thing that kept my anxiety at bay.

We waited for a long time.

It was so quiet.

Finally, the doctor came into the room. A female, with a very busy energy coming off of her in waves.

I flinched back mentally, unsure as to why the doctor seemed to make my unease worse.

I shook it off.

The doctor told me to lay down so she could examine my stomach. I tried to explain to her where the pain was, but she cut me off, asking me if I've ever had surgery on my abdomen.

My unease grew.

I told her that I no longer have a uterus, cervix, or fallopian tubes. I told her that I had a c-section years ago...

I got cut off again as the doctor answered her ringing phone, while continuing to press robotically in all the wrong places on my stomach; never apologizing or even acknowledging how unprofessional she was being.

The doctor stepped back, hung up her phone, and was about to leave. Ignoring me.

She then stopped and absentmindedly said to me, "So, no abdominal surgeries?"

I was dumbfounded as I corrected her, "Um, no, plenty actually..."

I had to explain all over again that I had a c-section, and a hysterectomy, and other surgeries before that because I had CIN3.

The doctor cut me off again, seemingly annoyed now, and asked, "What's CIN3?"

I looked at her, baffled, and tried to say, "Cervical Intraepithelial Neoplasia, Grade 3", but got cut off again halfway through saying Intraepithelial, by her saying, "Oh. I've just never heard it called that before."

I was irritated with the doctor now, and said, "Well that's all that medical professionals ever called it around me."

She ignored me again, and rushed out the door.

The unease I felt got much more intense.

After another long wait in the too quiet hospital emergency room, a new nurse came in. This nurse told me that she needed to start an IV because the doctor wanted to do a CT scan.

I asked why, since a simple ultrasound would have worked just fine for the problem I was having.

The nurse didn't answer my question, but proceeded to try to convince me to just do it.

I explained that, though I'm not a doctor, I do know my body and my repeated experience with this particular issue, and an ultrasound always works to see and diagnose it.

Not to mention the lack of radiation with an ultrasound.

I continued to ask... Since my veins wouldn't cooperate, and we could save time and resources and money, why wouldn't they do the ultrasound? I even said that if they HAD to, AFTER the ultrasound (IF it was somehow a different issue than the one that was being presented), that I'd do the cat scan.

But ONLY if it was absolutely necessary.

The nurse left, and we waited once again.

The quiet didn't help my unease.

After awhile, the doctor barged back into the room.

She looked at me and said with a bit of a sneer, "So the nurse tells me you're refusing treatment."

"No. I'm not." I said, caught off guard by the doctor's aggressive statement.

I said that I was willing to do an ultrasound, and only if it came back negative would I do the other tests.

My unease flaired.

I added that I didn't want to waste time and resources and money unnecessarily.

The doctor glared at me and told me I was going to be there for the next few hours, so I may as well just get the blood work done in that time.

Not bothering to explain that I was referring to the doctor's time to use wisely, not my own time, I explained again that I know my body and getting blood drawn is such an ordeal; why would I put myself through that unnecessarily?

She seemed exasperated and said that even if the ultrasound came back how I said it probably would, she'd still want my blood. That it was just practicing good medicine.

I asked why. They never needed my blood before for this.

She said if it was worse, that if the ovary was torsed, they'd need blood.

I told her it WAS torsed the last time.

She said that rupturing and torsion are different things.

I told her it was both.

She said, "Look I'm not calling you a liar, but..."

I cut her off this time. "Do you want to go look at my records? Because it's all in there."

I continued to explain to the doctor what happened to me, and she just stubbornly attacked everything I said.

She stared me down and said, "If you're worried about me being able to draw blood, I can go between your legs right now and take it from your groin."

There was so much aggression in her voice and words, that I physically flinched back this time.

My husband sat forward in his seat. He did NOT like the way this doctor was treating me.

It was too much. I quietly said, "Um. NO." Unable to think of anything else.

She threatened me.

She threatened me.

I quickly said that I would think about getting the other tests done, as she left the room.

The second she was gone, panic flooded through me. It was difficult to think clearly, though not impossible.

I kept whispering, "I don't want to be here. I want to go home." Over and over.

I turned to my husband, the unease coursing through my veins at full force now, and begged for us to go.

I couldn't stay another minute.

I felt UNSAFE.

Something was very wrong. I didn't know what it was, but my instincts were SCREAMING at me to RUN.

After promising my husband that if the pain got worse I'd go to another hospital, I threw on my bra and shirt as fast as I could.

As I was trying to get out of that room, a man pushing an empty wheelchair stood outside my door.

The ultrasound tech, I assumed.

I wouldn't be stopped now. I scrambled to say, "I can't.. I just can't.. I have to go!"

As I bolted, I avoided eye contact with everyone; desperate to escape.

I felt like I was in a horror movie, my adrenaline pumping hard, just wanting to feel safe again.

Once in the car, I apologized to my husband over and over. He was so reassuring and nurturing, telling me that I had nothing to apologize for.

I can't explain it. I don't know what it was. There was something very wrong with that doctor.

I WASN'T SAFE.

I know it's not rational. I knew logically, as it was all happening, that there was no reason for me to be afraid.

But my instincts were SCREAMING. I knew something very bad would have happened to me if I didn't get out right when I did.

And I've LEARNED not to ignore my instincts.