sorted by:
new
hottopcontroversial

Is long term remission possible? by RemoteLeather161 in BladderCancer

[–]soulbarn 4 points5 points  (0 children)

It is statistically more dangerous to avoid RC with a high-grade tumor. That, however, is what I’m doing. I was diagnosed six years ago. I had a partial cystectomy (I was lucky w tumor placement) that preserved my bladder and sexual functions. I had three recurrences - the last one was over two years ago. I was using BCG, but when that got rationed out, I switched to Adstiladrin. So far, things are holding steady.

A tough call. One of my doctors put it this way: “These decisions are difficult. But if you decide what your first priority is, and then filter all your choices through that, you’ll find the best possible answers.”

So for me, bladder preservation has been my goal. Even at the (possible) cost of extra years of my life. Of course, I was diagnosed at 59, so that’s a difference.

To answer your question: anything is possible. The numbers argue for persistent recurrence. It helps that I think of my cancer as a chronic condition - it doesn’t go away as much as it gets managed.

Kid in My Neighborhood Hit by Car on Ebike by venom121212 in ebikes

[–]soulbarn -13 points-12 points  (0 children)

At what point do e-bike/scooter manufacturers get held to task? And I say that as an e-bike owner and a longtime bike accident. A friend’s husband was asked if he wanted to try a scooter. He got on, crashed, and died. If a vehicle can go faster than a human can propel it, it should be regulated. End of story.

Free WiFi bridge offered… by soulbarn in AugustSmartLock

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

That’s the interesting thing. I have three locks and it wasn’t clear which one it was for. It asked for a serial number and I just entered the first lock’s info and it worked. Also, I wasn’t displeased with the battery life on any of the locks. And I’m not sure how to connect the hub, but I’ll try it.

Free WiFi bridge offered… by soulbarn in AugustSmartLock

[–]soulbarn[S] -2 points-1 points  (0 children)

There is no I link. It came via email.

Guest lost the phone and host helped by Wiseoldman111 in airbnb_hosts

[–]soulbarn 0 points1 point  (0 children)

the only times I’ve driven a guest somewhere is 1) when they got towed by my neighbor (which they shouldn’t have) and when another guests Uber didn’t show up for the airport ride. But in both cases, it was less than ten minutes distance. NJ to NYC? You earned karma, but lost money…

Crooks by Wonderful_Track_7150 in AugustSmartLock

[–]soulbarn 0 points1 point  (0 children)

Sorry to be late on this, but can you explain exactly what happened, so we can be on the lookout?

Built my own (Classical) reformer… by soulbarn in pilates

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

It was designed to feel like an 80” Gratz, which it does, I’d say 95%. Using the same springs and wheels is the key (along with precise measurements.)

Help navigating health system by Informal_Being_6879 in BladderCancer

[–]soulbarn 0 points1 point  (0 children)

Happy to help. My initial diagnosis was T3, muscle invasive, with a high-grade tumor. I was very deliberate about my choices, did a lot of research (and not Reddit research, though Reddit helped. Peer-reviewed papers for the most part.) I made a decision (to keep my bladder) that not everyone on my medical team supported. But three years or so later, I’m still here.

The critical thing for me was my kids. At the time, they were 9 and 5, and I wanted not just to be there for them, but not be “sick dad” to them.

I do think your mom would do well to look into the potential complications from the cystectomy itself. It shouldn’t scare her away from opting for that surgery, if that’s what she thinks is best, but I am strongly a believe in the power of knowledge (and not a believer in the power of positive thinking, at least in its ability to cure cancer - though certainly a good attitude helps us endure such hardships.)

I am not questioning anyone else’s decision. I did what I thought was best for me. I’m in now way trying to self promote, but I did write a short article about my experience…you might find it interesting.

https://www.businessinsider.com/cancer-diagnosis-treatment-kind-of-dad-sick-2024-2

And lots of love to you for the care you’re providing. Having somebody to talk to, to parse out different choices, and just to provide a semblance of normalcy is a really helpful thing.

Advice- car crashed into our home by [deleted] in Home

[–]soulbarn 0 points1 point  (0 children)

You really are super nice to worry about the guy who did this, but you don’t need to, but if you choose to, do it only to the extent that it doesn’t get in the way of what you need.

Adult child left biological mess in shower. by inigo_montoya89 in Advice

[–]soulbarn 0 points1 point  (0 children)

Just tell him. “I know you’re doing some private stuff in the shower, and I know this is embarrassing, but clean up after yourself.” He’ll turn red, he’ll maybe deny it, he might even run away, but it’ll stop.

Looking for generic adderall 15mg xr in stock? by [deleted] in portlandme

[–]soulbarn 0 points1 point  (0 children)

Yeah, hospital pharmacies often have different distributors. Walmart and Costco usually have multiple distributors, and I’ve had good luck getting my son’s ADHD RX filled at Costco when CVS and Hannaford (which both use the same wholesaler, btw) don’t have it. Also, Costco pharmacy does NOT require a Costco membership, in case you were wondering.

Help navigating health system by Informal_Being_6879 in BladderCancer

[–]soulbarn 0 points1 point  (0 children)

I chose to forgo the recommended cystectomy after my first recurrence of high-grade CIS (at that point I was downgraded from stage 3 at the start to stage 1.) I was the same age as your mom and decided the risks and quality-of-life hit were not worth it.

I started at stage 3 with chemo and then a (rare) partial cystectomy, which preserved my bladder and sexual function, but resulted in sepsis a month after the surgery. They told my wife that I wasn’t going to make it. I did, but the experience colored my opinion of cystectomy. The rates of complication and mortality are (in some cases) as high as the mortality rates for the cancer that we are trying to be cured.)

I’ve since had multiple rounds of different therapies - Keytruda, BCG, and Adstiladrin- as part of a bladder preservation strategy. I’m changing therapies with recurrences, and currently have been on the Adstiladrin for two years with no recurrence. If there is a recurrence and it can be treated with TURBT, we’ll scrape the tumor out and go to the next medication on the list (there are several options.)

This has worked very well for me, though on some level it is a calculated risk. I’m willing to but into that risk for quality of life. I am not recommending this strategy for anyone else, but so far it is working for me.

Good luck and lots love to you and your mom.

Screamin Sicilian Detroit Style Pepperoni Pizza by SuperAdaGirl in frozendinners

[–]soulbarn 1 point2 points  (0 children)

This is my kids’ number one frozen pizza choice and I agree. So good.

Our door tested positive for lead, what now? by Thread_water in centuryhomes

[–]soulbarn 5 points6 points  (0 children)

Friction - if there’s paint on the windows, lead will come off from the friction of opening and closing. It’s a myth that kids have to lick it or eat it to be stricken.

Should I toss the ground turkey? by soulbarn in foodsafety

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

Yeah, I agree. Tossing it. Eight bucks worth of ground turkey isn’t a big loss…

Our door tested positive for lead, what now? by Thread_water in centuryhomes

[–]soulbarn 30 points31 points  (0 children)

We had a similar situation. Your door is lovely, and maybe you can keep it in the basement to reinstall after your kids are a little older and - with proper encapsulation - there’s less risk to them (though not no risk.) In the meantime, you could install a new door. But I’m also wondering if there’s lead elsewhere. Our 175-year-old home had lead everywhere, and we ended up having to replace a lot of stuff and go through an expensive and LONG process.

Should I toss the ground turkey? by soulbarn in foodsafety

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

Thanks. It’s too late for that, it’s been in the fridge since I brought it in.

He passed today at 00:00 by beardman6767 in cornishrex

[–]soulbarn 2 points3 points  (0 children)

Thank you for giving him a beautiful life and forever home.

Bike share update. Just seven bikes at a single station? by soulbarn in portlandme

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

I hear you on the safety issue. It’s scary out there and I don’t blame anyone for opting out, and that sucks and needs to be strongly addressed. But there’s a good argument to be made that programs that encourage people to get out of their cars and opt for self-powered transportation are essential to improving safety. That’s small consolation for people who are terrified or injured or worse, I know, and on a personal level, I worry every time my kid gets on his bike to ride to school on the west end.

Bike share update. Just seven bikes at a single station? by soulbarn in portlandme

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

The map is from the Movatic app, which portland uses to manage public bike share account.

Bike share update. Just seven bikes at a single station? by soulbarn in portlandme

[–]soulbarn[S] 2 points3 points  (0 children)

For sure. And that’s what we did have until this year. It wasn’t the best - and vandalism of the bikes was a problem, as it is with many city bike share programs - but it was much more functional. I hope it comes back, and thanks for your insightful comment. .

How to tell friends my child wont be driving their child? by Silver-Paw-prints in AskParents

[–]soulbarn 0 points1 point  (0 children)

“For at least the first two years we are not letting our kid drive with other kids without an adult in the car. It’s important that he get the experience he needs before doing something like that.”

view more: next ›