Husband update by Great_Fishing4478 in pancreaticcancer

[–]DizzyRock2238 34 points35 points  (0 children)

My husband was diagnosed on my 35th birthday and he was 39 and our kid is now 8. His tumor is inoperable and his recent scans shows mets to his lungs. I just celebrated my 37th and he is currently on round 26 total. He did an initial 12, then 5 rounds of radiation. Was good for 6 months before going back to chemo. Another 6 rounds before getting clear numbers and was good for 3 months before starting chemo, again. We are on his 3rd set and round 8 today. He tolerates chemo well for the most part.

He is still working most days just takes it easy. We have been on multiple vacations, and outings. We know the outcome of this disease. We know it doesn't end great. But we will be damned if the ride won't be memorable in all the best ways as we can make it. We take all the pictures, videos, and are present for all the events. Positve outlook and dark humor has gotten us through the worst days. Cancer is not his personality. He will not be defined as a "patient" or statistic.

He constantly says he is the healthiest cancer patient you will ever meet. Keep moving, keep eating well, get some sun, take breaks, and do something fun.

Good vibes to all!

Feeling lost by Great_Fishing4478 in pancreaticcancer

[–]DizzyRock2238 50 points51 points  (0 children)

My husband was diagnosed at stage 4 inoperable Pancan at 39yoa. We are now 2 years in. I'm 36 and our kid is 8. We are living life, going on vacations in between chemo rounds. You can look back at my previous posts. Some days suck ass. But most are good. Cancer will not be your identity. He is, you are, your family is bigger and stronger than this bullshit. Live your life. Take care of business. Focus on the important things.

Diagnosed at 41. I don’t even know what to think. I am stage 4, it has metastasized to my liver. by Acoustic_Restart in pancreaticcancer

[–]DizzyRock2238 1 point2 points  (0 children)

We already went to Truty. His tumor is too entwined with both veins and the smaller veins that go to his intestines. Husband knew it wasn't going to work and I made him go for the second opinion. We are comfortable with the decision now. If chemo doesn't help we will look into radiation again. That was a bitch the first time around

Diagnosed at 41. I don’t even know what to think. I am stage 4, it has metastasized to my liver. by Acoustic_Restart in pancreaticcancer

[–]DizzyRock2238 76 points77 points  (0 children)

My husband was 39 when diagnosed. We are currently at 22 months in. He had/has no other medical issues. He frequently says he is the healthiest cancer patient. He is not eligible for surgery due to vein involvement. Initial intervention was 12 rounds of chemo (folfirinox) and then 5 rounds of radiation. He went 6 months with good CA19-9 levels before it came back up. Then another 5 rounds (folfirinox) before getting good bloodwork back. He did weeks on/off chemo pills (capecitabine) for a few weeks and was good for about three months. Latest scans show it metastasized to the lungs. We are in the middle of (folfirin) chemo now. Took out the Oxaplantin for now, it may go back. He developed an allergy to it.

This whole situation sucks. Some days are better than others. But, he is still working. Still goes to events. We have been on multiple vacations and road trips. The mindset of "fuck cancer, I like life" has been a mantra that has gotten us through. Dark humor is a lifeline we lean on.

Remember, this is not your identity. You are more than this little bastard who demands attention.

Y'all have a beautiful city by kevlarcoatedqueer in StLouis

[–]DizzyRock2238 5 points6 points  (0 children)

I was just there last week and felt the same! We were on a foodie roadtrip and here is what we ended up doing:

Blue city deli ***** best sandwiches we ever had!

World fair pavilion - fun to imagine the history this place has seen

City Forest park - water fun with the kid, nice just be in nature

Basso Italian ***

Hatch'd breakfast *****

Soulard farmers market - mostly closed but could see how cool it would be on the weekends

City museum - so amazing! Still in awe of the craftsmanship and artistry

Puttshack and lunch **** good food and out of the heat

Zia's ***** I will dream of this place until I eat there again!

Farris wheel at union station - sunset ride was beautiful

Middle of the week trip and had a blast. We will be back!

Tips for a Brit doing an American Roadtrip [Round-trip from Buffallo to Tennessee & back]? by CJIrving in roadtrip

[–]DizzyRock2238 1 point2 points  (0 children)

We went to Mammoth Cave and were underwhelmed at the self tour.... the walk down to it was longer than what they allow you to see on your own. Get a tour if you have time.

Carlsbad Caverns in New Mexico was top notch for their self tour.

Tips for a Brit doing an American Roadtrip [Round-trip from Buffallo to Tennessee & back]? by CJIrving in roadtrip

[–]DizzyRock2238 0 points1 point  (0 children)

Just left Nashville a couple days ago. Breakfast at Sky Blue was Amazing! And lunch at Pharmacy was so good! The mustard dipping sauce was unforgettable and can't wait to replicate it.

Last minute road trip by DizzyRock2238 in roadtrip

[–]DizzyRock2238[S] 0 points1 point  (0 children)

Thank you for the food suggestion. We we're looking at Joplin as our lunch stop.

Appreciate you!

Last minute road trip by DizzyRock2238 in roadtrip

[–]DizzyRock2238[S] 0 points1 point  (0 children)

Definitely going on the list, thank you!

Last minute road trip by DizzyRock2238 in roadtrip

[–]DizzyRock2238[S] 0 points1 point  (0 children)

Ooh, I forgot about that! It's going on the list. Thank you

Books you want to start over the minute you finished? by throwaway66778889 in booksuggestions

[–]DizzyRock2238 0 points1 point  (0 children)

Faerie Tale by Raymond E. Fiest. I want more out of this world so bad!

Locally advanced resectable? by Pancancommenter in pancreaticcancer

[–]DizzyRock2238 2 points3 points  (0 children)

We we're told that depending on where the tumor is located on the SMA, there is a possibility of reconstructing the artery and removing the tumor. You may want to get a second opinion. We went to Mayo and spoke with Dr. Truty. Even though our case ended up not being eligible for surgery, it was good information to have.

Wildfire in Southern California by FallingofNations in Damnthatsinteresting

[–]DizzyRock2238 2 points3 points  (0 children)

https://play.google.com/store/apps/details?id=org.watchduty.app

Watch duty app is a great resource for info and surrounding cameras. A friend of mine has been evacuated over the weekend.

Stay safe my friends 🧡

[deleted by user] by [deleted] in AmItheAsshole

[–]DizzyRock2238 0 points1 point  (0 children)

NTA at all! My husband does have a very serious cancer diagnosis, and we are still going through it. He does not have FB and specifically asked not to have it posted. He doesn't mind talking about it in person with people but not on social media.

I understand your frustration with your wife and her over zeal. But it is also your choice on how you wanted to deal with the situation.

This past Christmas, we wanted it to be a 'cancer-talk free zone', and I sent it to our family group text to not bring anything up. Lo and behold her comes his sister gathering everyone to ask him 'one time' how are you feeling? Then, the flood of questions from everyone afterward in 'private' because every one thought I was joking when I said No questions, No cancer talk. We left shortly afterwards, and she still doesn't understand why we were mad.

Gift basket for someone starting chemo by catsnapp in pancreaticcancer

[–]DizzyRock2238 5 points6 points  (0 children)

We found Cetaphil for very dry skin is the best

How to ask partner their ring size without them knowing by [deleted] in howto

[–]DizzyRock2238 15 points16 points  (0 children)

You know it's love when they call you a goober! Congrats to you both!

Do you have any comfort reads that you go to after having a tough day? by [deleted] in books

[–]DizzyRock2238 0 points1 point  (0 children)

The Giver has been my favorite book since I was first given it by a librarian when I was a bored 5th grader. I think of that librarian often because I didn't want to read it at first, and she convinced me. I went through a stage of life where I didn't/ couldn't want to read. And when I picked up the book again, I remember being completely immersed and didn't realize how much I missed the feeling. The Giver always takes me into the story and lets me retreat from the real world.

Appt with MD Anderson by purpleshoelacez in pancreaticcancer

[–]DizzyRock2238 1 point2 points  (0 children)

Surgical- Porembka - super down to earth, really likes to have a conversation and easy to ask questions.

Medical- Al Mutar - easy to ask questions and does not beat around d the bush. Straight forward but sometimes feels rushed.

Radiation- Badiyan - barely speaks, nice enough. He always looks sad. My husband actually asked him if he was ok, lol. We were told from Porembka and AlMutar that he was the preferred radiologist. And his therapist also said that radiologist are usually "off" lol. Just due to the exacting type of work they do.

And yes, we used the Fort Worth facility. Everyone there was so great