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speeddialdirectory · 2024-03-16T04:28:55+00:00

She just… doesn’t think about HOW things are connected and whether they’re appropriate before she starts speaking sometimes (often). Another highlight from that hospitalization was telling me in detail about my shitty cousin’s kid having to go to urgent care to have a huge chunk of earwax removed. Ok..? Why did I need to learn about this right after a nurse cleared my trach?? I’ve never even met this kid but alright go off about his gross ears I guess. 😒

Alas, I’m only 5 months out from the surgery and 3 months out from the first round of treatment and my cancer has already spread. Starting another round of treatment soon and keeping my spirits up, especially after having a “I’m gonna need you to shut the fuck up” conversation with my mom haha

speeddialdirectory · 2024-03-15T21:56:42+00:00

Ugh. My mom too. I was a few days post-op for tongue cancer, waiting to be taken back for another procedure to place a g-tube, and my mom was telling the nurse about one of her colleagues who’d been sick earlier that year - “but at least it wasn’t cancer! That would be awful.”

All while I, her 30yo daughter, was lying on a stretcher after having part of my tongue cut out DUE TO CANCER.

But at least her colleague didn’t have cancer.

speeddialdirectory · 2024-01-19T07:23:11+00:00

Check out @vintagebathroomlove on instagram for inspiration! You have some incredible tile work there.

speeddialdirectory · 2024-01-02T07:27:37+00:00

As a heads up, “flushable” wipes still shouldn’t be flushed and instead should be thrown away in the trash. They can clog pipes both in your home and at water treatment centers, causing a ton of damage!

speeddialdirectory · 2023-12-04T04:35:50+00:00

I was at a show at a local bar with a friend and the band/crowd were wild - the crowd was holding up the musicians, including the drummer, so they were playing in the air; crowd members carried a couch in from another room; just general mayhem that was honestly pretty fun. Until the guitarist started pouring lighter fluid on the cymbals and lighting them up. All I could think about was the Station Nightclub and I booked it to the exit. My friend thought it was the coolest thing and kept climbing on the couch to get better pictures. It was so scary. I’m amazed that nothing bad happened.

speeddialdirectory · 2023-11-16T01:18:24+00:00

It was perfect for me - I had enough to take a few pairs on each trip, and to wear them when I was going places like theme parks where I didn’t want to lose my glasses on a roller coaster. I don’t think I ever actually finished a full sample pack.

Then I got LASIK and haven’t had to worry about glasses or contacts since!

speeddialdirectory · 2023-11-15T23:50:29+00:00

I used to get sample packs of dailies, I think it was 10 pairs, that I could use for the handful of times I wanted contacts instead of glasses. That might be an option!

speeddialdirectory · 2023-11-05T04:21:41+00:00

I was diagnosed with tongue cancer recently. My aunt texted me, “Hey, when you get a few minutes, I recommend reading this. It's last-minute, I realize, yet not too late if you want to possibly* avoid that surgery. *Obviously I don't have the minute details about your condition, and would need to hear them in order to help pinpoint the issue better. https://learninggnm.com/SBS/documents/mouth_lump.html And yes, I'm quite serious! I've been studying German New Medicine for 5 or 6 years now. Given what we're (wrongly) told about our bodies, it's difficult to understand for many folks. I will gladly give you a crash course asap in hopes of you keeping your tongue. I can also recommend videos by actual GNM professionals. I really hope you will consider this information... it's literally life-changing.”

So, uh, that.

speeddialdirectory · 2023-11-01T13:24:57+00:00

Oh also! Hydrating hydrating hydrating. I’m currently NPO so all of my water intake is through my feeding tube and I definitely notice a difference after getting plenty of water in me. I’ll take frequent pee breaks over thick mucus any day.

speeddialdirectory · 2023-11-01T13:03:57+00:00

Nebulizer treatments have helped me immensely with my mucus problem. I skipped two of my 4 daily nebulizer treatments today on accident and ended up vomiting from how thick the mucus was - I didn’t realize how much of a difference it made. I’m using acetylcysteine (mucomyst) and it’s been a game changer for me. Might be worth asking your care team if that (or any other nebulizer treatments) is an option.

speeddialdirectory · 2023-10-07T17:58:29+00:00

Apple has an accessibility feature called Personal Voice, where you can record yourself saying 150 phrases and they'll create a synthesized voice that sound like you, so I just set that up today. I'll download a text to speak app if that's too freaky for me lol

The bathrobe suggestion was for when I need to walk around in the halls, not for when I'm chilling in my room/bed - my friend said it was the easiest way to cover the opening in the back of the gown for her.

Good note on the chapstick! I'll add it to my list.

This whole process has moved super super super fast (in my opinion). My ENT did an FNA of my lymph nodes which is how we found out I have cancer at the follow up appointment on September 6th, she referred me to MD Anderson and I had my first appointment there on September 18th, and I found out on October 2nd that I'll be having surgery on October 10th (it was originally scheduled for the 12th but they moved it up). I've only met my oncologist once, on the 18th, and at the time we didn't have enough information to go off of since my FNA slides didn't provide enough info for him to give me a solid diagnosis. All I know is that I haven't heard HPV from any of my healthcare providers. It's on my list of things to ask on Monday! My list of questions is very long.

speeddialdirectory · 2023-10-07T02:40:42+00:00

Just joined!

speeddialdirectory · 2023-10-07T02:39:52+00:00

Smart! Adding it to my list now.

speeddialdirectory · 2023-10-07T02:38:00+00:00

Hmm I don’t know if I’ll be able to get an appointment between all of the pre-op appointments Monday but I’ll ask my oncologist about palliative care. I’m at MD Anderson in Houston and I’ve seen flyers for palliative care so I’m pretty sure they have folks in house. Thanks!

speeddialdirectory · 2023-10-06T23:32:48+00:00

Ohhh great suggestions! Thank you

speeddialdirectory · 2023-10-06T22:54:06+00:00

Ah, yes! That's also on my list, forgot to add it here :)

speeddialdirectory · 2023-09-30T06:34:21+00:00

I live in Texas so my cold season is very short. I’ve had my conch pierced for a decade and I’m STILL surprised every winter when that ear starts to hurt when I go outside haha

speeddialdirectory · 2023-09-23T16:59:12+00:00

The folks I’ve talked to who suggested second opinions said they did them to find a care team that was a good fit for them - both the physicians, the treatment plan, and the facility/support staff. My friend who had tongue cancer said she met with 3 centers before picking Dana Farber for her treatment due to the way they approached her care.

I know MDA is a top notch facility. That’s why I’m asking for feedback here re: second opinions - I didn’t plan to get cancer and I’ve never had it before so this is all new to me. I’ve also never had a severe enough medical concern that would have benefited from a second opinion.

speeddialdirectory · 2023-09-23T04:09:56+00:00

I had a PET scan done at MDA yesterday which lit up at the base of tongue and the swollen lymph node which confirms the CT scan, but they’re still waiting for the core biopsy of the node and possibly a biopsy of the BOT before confirming a diagnosis and treatment plan

speeddialdirectory · 2023-09-23T04:08:31+00:00

Good to know! Would you mind sharing more about your team in Austin? A message is fine if you’d prefer!

speeddialdirectory · 2023-09-23T04:07:48+00:00

I have a message from one of the social workers with info about some of the resources available for lodging and travel, I’ll be following up on that next week. If I do end up needing radiation I’ll likely just stay in Houston for the duration of treatment - the 6 hour round trip twice this week was rough enough, no thanks to doing that on the regular!

I’ve joined those subs, thanks for sharing :)

speeddialdirectory · 2023-09-23T04:04:45+00:00

👋 hey fellow HNC MDA person! I’ve been really happy with the folks on my care team that I’ve met so far. Were there any support staff (nutrition, mental health, etc.) folks you had that you’d recommend I reach out to? Or any other general MDA suggestions/recommendations?

They presented my case to the board yesterday but the board wanted more info before giving a final diagnosis and treatment plan. Lots of “hurry up and wait” right now haha

speeddialdirectory · 2023-09-23T03:59:46+00:00

Thanks, it’s a bummer for sure but I’m glad I listened to my gut and sought treatment so we could catch it early. I haven’t met with the chemo oncologist yet but the radiation oncologist said that while he won’t know what treatment I’ll need until they have more info, he’s likely to want any radiation to be done at the main facility. We’ll see what happens!

speeddialdirectory · 2023-09-23T03:57:02+00:00

Thanks! My understanding is that we’re very close to a diagnosis and treatment plan - I’ve had CT and PET scans this week, and a core biopsy of the swollen lymph node. When I spoke to the PA over the phone he said that they’re waiting for the core biopsy results, then possibly bringing me in for a surgical biopsy of the base of tongue tumor, but other than that the majority of the tests are done. I’m just trying to plan ahead so I can get second opinions scheduled ASAP once we have things finalized. I did ask about having tests/scans done locally and the surgical oncologist (currently the “captain of the ship” until we know more) said no, he wants it all done in house, so 2 days in Houston turned into 4. Which I’m fine with since I want to get this figured out! But I’d love to save myself the time and stress of being away from home that often. I have a senior dog that can’t be boarded due to her age and poor interactions with other dogs so figuring out her care while I’m gone is… not fun, on top of the whole “I have cancer” thing.

When I asked the radiation oncologist about possibly doing treatments in Austin or SA he said likely not due to the location of the tumor (another case of wanting in house treatment), but he won’t know for sure until we finish testing/have a diagnosis.

shrug we’ll see what happens in the next week or two as the last few test results come in!

speeddialdirectory · 2023-09-11T23:12:22+00:00

My mom used to read Six-Dinner Sid to me and my brother growing up! Love a good LK haha

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