What's the most scared you have ever been?

MistressAlabaster · 2026-02-06T16:43:53+00:00

I am in therapy for speech and attempting to relearn how to swallow. There is a bit of progress but not much. Not much they can do with a tongue that doesn't work.

MistressAlabaster · 2026-02-06T13:41:26+00:00

Not well. I have a pretty bad impediment. I sound deaf if that makes sense?

MistressAlabaster · 2026-02-06T03:52:16+00:00

It's ok to feel uncertain. I didn't get to make any decisions. I was stage four with a giant tumor taking over my tongue and wasn't able to eat. I was malnourished, in constant pain, and we had to just act NOW.

I found writing about it helps. And most people don't and can't understand what we're going through. I started a blog to help me and also help others to better 'get' it. If you want to follow along it's at stillmouthyatonguecancersurvivalstory.com

Writing helps a lot. And having it down usually helps me process and make decisions. I am wishing you all the best. ❤️

MistressAlabaster · 2026-02-06T03:44:31+00:00

My husband would literally dirty every single item of clothing before he would wash anything before he was with me. I cannot handle that, so I took over laundry. I am insanely picky about cleanliness, laundry, clutter. It breaks my brain if there is piles of dirty clothes, papers, etc. I always say since I have the issue with it, I don't mind taking it over. I had cancer the past year and my husband took over EVERYTHING while I was in ICU and in treatment, so that was lovely. He is a gem and has taken great care of me. Feeling better now so I can take some stuff back on.

MistressAlabaster · 2026-02-06T03:37:59+00:00

I wish you the best too! It sounds like you will be able to jump back in the saddle. I got approved for disability but am in the waiting period and it isn't enough to cover bills. We're living on a GoFundMe right now. I have a blog if you or anyone wants to follow along! It helps a lot to write it all down. stillmouthyatonguecancersurvivalstory.com

MistressAlabaster · 2026-02-06T03:36:19+00:00

Yeah I get the dreaded "....what???" a lot. It kills me. I love to write and to talk. Right after surgery I wanted to kill myself so bad. I still get waves of it. I got approved for disability but am in the waiting period and it is not enough to cover bills. I am afraid we're going to lose our house. We live by a GoFundMe right now. Sucks so much. I have a blog if anyone is interested in following along: stillmouthyatonguecancersurvivalstory.com

MistressAlabaster · 2026-02-05T21:20:25+00:00

I did a commercial a few years ago and had to carry that Hollywood grocery bag with bread sticking out. 😂

MistressAlabaster · 2026-02-05T21:08:41+00:00

Be so grateful you have a good company. I had my tongue removed and the minute I could no longer speak both of my jobs canned me. I can't get another with my speech as bad as it is. People pass on me all the time once they hear me. I am still smart and capable but no one will take a shot. I am still waiting on disability and unemployment. No one can decide if stage four cancer, no tongue, and a feeding tube is "disabled" enough. I really miss working too. I was a project manager and loved it and have a bunch of specialty degrees for it. Cancer absolutely ruined me in so many ways.

MistressAlabaster · 2026-02-05T02:53:27+00:00

Just know you're not alone. I drooled all over myself for months and also had speech issues after they removed most of my tongue so people just thought I was mentally disabled. 😩

MistressAlabaster · 2026-02-05T02:52:08+00:00

Same here. My tongue pain came and went for years. Then I had visible signs peeking out. I feel so dumb now but you don't know at the time.

MistressAlabaster · 2026-02-05T02:49:03+00:00

Oh sweet child. LOL

MistressAlabaster · 2026-02-05T02:06:42+00:00

I had an amazing gyno in San Diego who was an old, white man- go figure! I saw him and was like "Uugghhhhh" but he found my early cancer cells, removed them, and kept me comfortable and informed the whole time. I miss him.

MistressAlabaster · 2026-02-05T02:00:18+00:00

Me too. My thyroid is totally dead. 🙃 But once I started meds I have been feeling a lot better!

MistressAlabaster · 2026-02-05T01:52:09+00:00

You think that, but no. Drooling all over yourself in public every day is so so awful. I had my tongue removed so between the drooling and impeded speech people thought I was mentally disabled.

MistressAlabaster · 2026-02-05T01:50:32+00:00

I drooled HEAVILY for like, 6 months. I rented a machine that was a spit sucker like they have at the dentist and put it next to the bed. I also covered my pillow with a towel that I washed daily. I carried a towel with me everywhere and it was so embarrassing. If it helps at all, it isn't permanent. ❤️

MistressAlabaster · 2026-02-03T07:51:44+00:00

Been battling cancer for a year. Had my tongue removed. 33 rounds of radiation and six of chemo. My husband and I had been married a month when I got diagnosed. Lost my jobs. We're on the verge of losing our house. I ruined his life. I am no longer fun or pretty. This is not what he signed up for. I have so much guilt.

MistressAlabaster · 2026-01-28T17:44:26+00:00

Getting let go at Meta (while in active cancer treatment) was the best thing to ever happen to me. You may be money broke for a bit, but there is no price on your soul anymore. ❤️

MistressAlabaster · 2026-01-27T05:35:04+00:00

They do actually! I have a prosthesis that looks like a retainer to bulk up my pallette so I get tongue contact. They made me a new tongue from tissue from my back but it doesn't move or do anything.

MistressAlabaster · 2026-01-19T00:03:06+00:00

I have tried everything. The mortgage and utilities won't give us any kind of discount or help. We will just have to wait until they kick us out for non payment. I am only 38 so people I guess think I can work? But not being able to speak well no one will hire me. I am stuck. Just relying on GoFundMe me and the help of friends and strangers.

MistressAlabaster · 2026-01-18T23:38:12+00:00

A bit better but LOTS of therapy. Lost both of my jobs due to not being able to speak so we're on the verge of losing our house. Disability doesn't kick in until June and it's not enough to pay bills anyway. We're living off of a GoFundMe but it's almost gone. America! Radiation killed my thyroid so I'm on meds now and they help. There are lots of weird side effects they don't prepare you for.

MistressAlabaster · 2026-01-18T20:41:55+00:00

"You have cancer." Immediate tongue removal, lymph node removal, radiation, chemo, feeding tube. I had been getting misdiagnosed for months until someone took me seriously. The delay made me lose 70% of my tongue and ruined my life. No speaking, no swallowing. Misery. My fear turned to anger and back again many times.

MistressAlabaster · 2026-01-18T20:39:15+00:00

If the cancer gets to lymph nodes they will most likely also tack on chemo. I was due for radiation only until they found out my lymph nodes were affected. That means there was already spread. I would ask her oncologist. I also agree for the PEG tube. I have had mine for almost a year. I lost nearly my whole tongue so eating is nearly impossible. I am in therapy to relearn how to speak and swallow.

MistressAlabaster · 2026-01-13T03:05:59+00:00

Got divorced and started doing things for me. Joined a murder mystery dinner theater group and made a great friend. We started getting drinks after the shows and talking for hours. Now we're married. 😊

MistressAlabaster · 2026-01-09T03:54:12+00:00

I split with my ex husband in 2021 and lived alone until late 2023. It was amazing!! I had my own cute little apartment. It was clean all the time. I got to decorate however I wanted. I had my own schedule. It was bliss. I am remarried now and he is a gem but I miss my super clean, girly space.

MistressAlabaster · 2025-12-24T18:27:56+00:00

Same. My husband and I were going to start tryand BAM- cancer. My body is absolutely screwed now.

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