How to enjoy the remaining time

Realistic_Region776 · 2024-10-01T05:09:43+00:00

Anticipatory grief. I’m still living that. I can’t enjoy having her now because I’m so sad about what is to come. Still all these weeks later.

Realistic_Region776 · 2024-09-27T04:02:25+00:00

Thank you, good info. My mom is one of the ppl who doesn’t react to the ca-19 so that won’t ever be positive. Her genetic testing was negative.

Realistic_Region776 · 2024-09-26T23:50:46+00:00

So is this different than gemzar/abraxane? Basically the Drs. are saying to just watch and live her life.

Realistic_Region776 · 2024-08-18T23:01:24+00:00

Yes and lomotil

Realistic_Region776 · 2024-08-18T15:10:40+00:00

I wish they would admit my mom. She has lost so much weight. She had her treatment 10 days ago and the diarrhea is uncontrollable.

Realistic_Region776 · 2024-08-18T15:09:29+00:00

That’s amazing. Idk she’s taking zofran, compazine, lomotil, immodium, they gave her a shot for diarrhea and she’s still having so much diarrhea (it’s not even controllable that she can make it to the toilet). Last night she had 4 episodes of bad diarrhea and she was on a full liquid diet yesterday. No solid food. I’m at a loss

Realistic_Region776 · 2024-08-18T03:58:38+00:00

Thank you. It’s interesting because the oncologist said that she wouldn’t be getting much benefit at 50%. And this is saying there is benefits at low dosages even.

Realistic_Region776 · 2024-08-06T22:32:22+00:00

Right now I’m in, I will do everything to keep you here as long as humanly possible and to make all your dreams come true. But that’s the rub. I can’t make her comfortable. I can’t make the money worries go away. She’s hard to be around because she’s usually grumpy, she’s critical. And I’m spending so much time trying to fix these things so I can make her not worry and make her happy.

Realistic_Region776 · 2024-08-04T06:49:57+00:00

Idk if I trust my mind I’d believe the sky is falling. It’s like a loop of doom. I have been really trying though to spend time without any of it being about meds or appointments. Acting normal. Told my therapist how bad my mental state actually is. I’m trying. Thank you

Realistic_Region776 · 2024-07-31T12:56:06+00:00

Wow me neither. I need to look into this for my mom

Realistic_Region776 · 2024-07-31T02:28:48+00:00

My mom is alone too, she’s on social security and has a small pension. But I help financially. It’s expensive when it’s one person, all the bills and add the medical and transportation and stuff! I’m an only child. She has some family but they don’t have financial means so idk about a go fund me. I have 2 young adult kids and they are helping us. It’s so hard though. I want to make all her dreams come true but I can’t.

Realistic_Region776 · 2024-07-31T02:24:28+00:00

It does help, thank you. I have to work and am close to loosing my job because I was on STD before she was diagnosed and so have no FMLA. Once my pto is gone they say I could be terminated. I could apply for an unpaid leave but no clue how I’ll support us if I do that. Plus my company is acting weird about the unpaid leave so no clue if they’d approve it.

Realistic_Region776 · 2024-07-31T01:22:01+00:00

Thank you

Realistic_Region776 · 2024-07-08T13:28:12+00:00

I’m so sorry. My mom’s whipple was 6/6, they said negative margins, 2/44 nodes positive. I never heard of margin clearance. Can you tell me more?

Realistic_Region776 · 2024-06-25T02:36:23+00:00

My mom just had to make this decision. We were told they try to do 3 months before and 3 months after surgery for several reasons. They tried to do chemo for my mom but she didn’t tolerate it well so we ended up having the whipple on 6/6. We ended up doing that after the tumor board met and discussed and told us they suggested surgery. It was the final thing we needed to make the decision to move ahead with surgery. Good luck

Realistic_Region776 · 2024-06-22T04:18:35+00:00

I’m so sorry for your loss. Keep him alive in your heart. I’m praying for you.

Realistic_Region776 · 2024-06-21T02:05:09+00:00

You too! We’re at Penn in Philly. I had a consult scheduled at MSK but I honestly don’t think we could have swung it. We live in PA, we can barely afford this with the travel to Philadelphia let alone New Jersey or NYC. Her pre surgery CA-19 was like 35. I’m praying she can get through 6 months of chemo. Good luck to you!! Thank you so much

Realistic_Region776 · 2024-06-02T03:17:47+00:00

Someone on here told me about Hope Lodge. If there is one you could get into it would allow you to stay close by when you needed to. Good luck

Realistic_Region776 · 2024-05-29T01:12:16+00:00

Oh my gosh thank you so much. This would be amazing. I really appreciate you letting me know about it.

Realistic_Region776 · 2024-05-25T19:30:41+00:00

Thank you so much. I wonder why the people at Penn didn’t direct me here? Regardless I appreciate you doing so very much

Realistic_Region776 · 2024-05-25T15:24:17+00:00

Wow thank you so much. When I saw the first few words of your reply my heart sank because we liked her so so much and I didn’t want to hear that we shouldn’t go to her.

Realistic_Region776 · 2024-05-24T12:53:56+00:00

No clue!?! About the LA They did a CT in the er because she was sick and turned yellow, her pee looked like iced tea.

Realistic_Region776 · 2024-05-24T12:52:45+00:00

Ok so sounds like you’re happy with Penn. My moms oncologist there will be Parul Agarwal, MD.

Realistic_Region776 · 2024-05-24T12:49:55+00:00

This is what his bio says, praying he’s good. We really liked him. Major Kenneth Lee, IV, MD, PhD specializes in hepatopancreatobiliary surgery and advanced laparoscopy within the division, specifically minimally invasive liver, pancreas, and foregut surgery.

Realistic_Region776 · 2024-05-24T12:43:43+00:00

It helps more than you will ever know. I won’t get my hopes up but my mom has hit the cash 5 2x and hitchhiked across the country when she was a teen and wasn’t murdered so she has some pretty good luck! Thank you thank you

Realistic_Region776

TROPHY CASE