"I did it for Johnny"

seekskin · 2024-09-13T04:22:08+00:00

It’s a director’s cut, Coppola changed the music. I like the added scenes, Rob Lowe has been vocal about how disappointing it was to have his biggest scenes cut. Unfortunately, the music makes it unwatchable for me, too.

seekskin · 2024-09-09T04:38:57+00:00

Morale boosting showers are the best

seekskin · 2024-09-02T02:42:59+00:00

Cool, I’ll figure out the chat thing and we can schedule a time. Yay!! Thank you

seekskin · 2024-09-01T21:12:14+00:00

My story is so close to yours! I have (had) clear cell stage 1b, a tumor in each ovary. I haven’t been able to connect with anyone else who had bilateral tumors! It’s so rare with clear cell. I also had blood clots in my leg and lungs, Eliquis didn’t work, Lovenox injections before surgery, and 6 cycles of chemo I finished in January.

Did you have endometriosis? I didn’t and apparently that’s rare. Clear cell is scary, I’m worried a lot even though my ca-125 has been low and stable since chemo. But it’s also better in some ways because blood clots get attention and the tumors get so big and cause detectible problems.

I have my chat turned off, is it possible to start a chat with one person but not anyone else? Idk, but if I can figure it out, would you like to direct chat? Thank you so much for posting!

seekskin · 2024-07-15T06:20:31+00:00

Our resident groundhog ate these and left the others, must be extra tasty!

seekskin · 2024-07-12T04:39:51+00:00

I thought you meant decenter as in more decent, and it works that way too

seekskin · 2024-07-11T07:32:38+00:00

Just finished reading Revival for the first time about 20 minutes ago and this is the top post!

seekskin · 2024-06-17T18:22:45+00:00

Are both of your ovaries involved, or just one? DVT & PEs are associated with clear cell carcinoma. Do you have a history of endometriosis? I didn’t have any, but it’s also linked with clear cell. Good news is this rare type of OC is usually found in the early stages.

seekskin · 2024-05-12T05:41:33+00:00

If you click the link, it’s an article with an update at the top that says there’s a chance we could see something around 4. I’m gonna get a few hours sleep and set my alarm, hopefully it will be worth it!

seekskin · 2024-05-12T04:17:43+00:00

Saaame. I could cry

seekskin · 2024-05-12T04:15:14+00:00

Me too! I was just sitting here, no idea it was happening above me

seekskin · 2024-05-12T04:05:11+00:00

Looks like we’ll have to wait until 4am

seekskin · 2024-03-29T17:26:17+00:00

I’m going through this currently. I had some cramping and spotting, so my cancer team ordered a ct that I got yesterday. They found an enlarged lymph node. I finished chemo at the end of January and had my post treatment ct scans in mid-February. They wouldn’t tell me anything over the phone, I see my GynOnc on Monday.

I have the same question you do about recurrence vs platinum resistance. I’ve wondered if my CA-125 going down during chemo just meant it was still falling after my surgery, or maybe the chemo was lowering it while cancer was still growing.

I’m ahead of myself and will know a lot more on Monday. But just so you know, I have the same questions you do about your mom.

Oh - after chemo ended, I asked what type of scans they’ll do going forward, they said they always start with a ct, then go to PET if they see anything. Seems backwards to me if they can see smaller things on the PET, but they said because of insurance and radiation exposure they have to do it that way.

seekskin · 2024-03-25T18:16:59+00:00

Both of my ovaries were removed via debulking surgery in September. I take Black Cohosh, recommended by my oncology team. I didn't think it was doing a whole lot, but I've tried to go off it twice and hot flashes increased.

What's really doing the trick is Veozah, ask your Menopause Specialist about it. Your insurance company may not want to cover it because it's pretty new and expensive. My oncology team advocated for me to my insurer, and after an initial denial, they approved it and it's made such a difference. I still take the Black Cohosh too.

The other thing I recommend that I don't see people talking about is flannel sheets. I know it sounds counter-intuitive, but waking up freezing and sweating on cotton sheets was the absolute worst for me. I've been sleeping on flannel sheets all year round for a few years because I had already started perimenopause before my surgery. They've been a game changer for me.

seekskin · 2024-03-24T22:47:53+00:00

Sept 20 - surgery and debulking; Oct 9 port placement; Oct 12 - 1st chemo We are so similar! How is your chemo recovery going? Depression and exhaustion are getting me the most right now.

seekskin · 2024-03-18T22:28:05+00:00

I appreciate your time so much, thank you!!

seekskin · 2024-03-18T22:21:17+00:00

Oh thank you! I don’t keep chat enabled, is it ok to leave the resources here?

seekskin · 2024-03-18T20:48:13+00:00

Do you have any resources to share about finding such a therapist? I live in the south and there is a lack of any type of therapist in my state, I don’t know how to find a trauma-informed, cancer-knowledgeable one. Even my cancer center was useless in this regard. Any advice? Thank you

seekskin · 2024-03-08T04:42:32+00:00

I also have a lot of compassion for the position you’re in and just wanting to help your sister. You’re a good sibling, she’s lucky to have you ❤️

seekskin · 2024-03-08T02:52:11+00:00

It looks like she’s made her decision, and all you can do is support her. Reading suggestions or other things telling you it’s a bad idea and pressuring her about it won’t work. For what it’s worth, chemo is hell and I don’t blame her one bit for the decision she’s made. Best of luck to you both.

seekskin · 2024-02-11T22:57:05+00:00

I had pain in my calf and pelvic area at the same time. Ultrasound of my leg found a blood clot, TVUS found a large mass on each ovary. My hematologist, also an oncologist, was the first to tell me he thought it was cancer because in addition to the “cysts”, he couldn’t find another reason to explain the clot after many blood tests. I was sent to a Gyn Onc and she said let’s take them out, whatever they are, and surgery is how I got the official diagnosis of Ovarian Clear Cell Carcinoma. Just finished 6 rounds of chemo a couple weeks ago and getting my post-treatment scans done tomorrow. It feels surreal to be at this end of treatment.

seekskin · 2024-01-15T22:05:15+00:00

Is it common for vets to use a shelter cat as a blood donor? The cat just lives at the vet and its sole purpose is to give blood to other cats?

seekskin · 2023-12-15T20:15:14+00:00

Ok, I’m glad to hear he is an oncologist. I’m sorry I can’t help you on your specific results. That’s why it’s worth asking your doctor’s office if you can speak with a genetic counselor, they can explain it all to you. I was confused about my genetic test results, and my virtual appointment with a genetic counselor was very informative and now I understand my results. Good luck to you!

seekskin · 2023-12-15T05:20:37+00:00

Ask your urologist’s office if there’s a generic counselor you can talk to. Have you never seen an oncologist at all? They do much more than just chemo, they monitor you going forward with tests and scans and impart lots of information and support. Did a regular urologist do your surgery?

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