Today's Roulette Menu

Tumor board says...more MRIs to see how it goes. So no surgery, which is a relief (that was beyond brutal last year). We're hoping the bleeder will just go away vs. rupture. So that's a fun roulette wheel to ride.

Thankfully, it's not as symptomatic as the one they removed. I just have to take it easy when it acts up, not get hit in the stomach, and go to the ER if it gets worse so they can look at me and go 'we've never heard of that.' Them's the rules.

Which, by the way, the second you absolutely cannot get hit in the stomach, you know what happens, right?

The universe just comes for you no holds barred.

I have taken more hits to the stomach this year than I have in my entire life. I could be in a padded room, wrapped in bubble wrap, and there'd be something walloping my gut. The universe knows what's up.

Anyway, I've been doing a 'dirty' anti-inflammatory diet this week to see if I can find something sustainable that might help persuade the tumors to go away. 

It turns out, the anti-inflammatory diet is basically plant based vegan with a lot of nightshades for flavor so that limits my options (for anyone who doesn't remember, I love tomatoes but they hate me). So there's been a lot of sweet potatoes. A lotta orange glop, man. So much orange glop.

Dirty =  some butter, some cheese, diet rootbeer and more sugar than I'd like to admit. I'm working on it. 

In other news, kiddo has PT and neuro set up. Knock wood, she hasn't had any bad falls since the one that prompted me to ask for the neuro appointment.

Up to Date

Hello! Long time, no post. But like, no one ever makes it to the front page of this blog, so really I'm just talking to myself. Per my stats, there are just a handful of posts that see all the traffic.

Anyway...

When last I posted, I was working submitting my case to the NIH for a study, trying to get a uterine ablation set up as well as an MRI for a tumor check.

That particular tumor check was uneventful.

I finally got a letter for the NIH from the endo I like and sent NIH everything. (Surprise, surprise the endo I thought was an ass couldn't even spell my name right making their letter unusuable. Lovely attention to detail. Just lovely.)

NIH called me several times. Yes. The actual researchers called and talked to me and then...crickets. The last time I heard from them, they wanted to know how often I was on prednisone. So I'm guessing the steroids disqualified me.

Womp womp.

They didn't outright refuse my case, so maybe I'm on a reserve list...if they can't find any better candidates maybe I'll get a call??? I don't know.

Life goes on.

I had the uterine ablation. I love my OB/GYN. We work well together and they are just magic. Super easy procedure. Very little pain. Absolutely the right move to head off heavy cycles due to the inability to use birth control pills. In fact, my body still manages to have some kind of cycle despite the ablation, and I have no doubt that, without that procedure, I'd be having all sorts of issues with anemia.

Only downside...getting back to exercise after recovery, I messed up my hip and I've had problems for the last 6+ months. It's been really frustrating and I haven't been able to be as active as I'd like.

I had another MRI tumor check last week. I didn't know what to make of the report. I could tell a tumor about the size of a walnut was bleeding internally. The other tumors showed 'fading', they weren't registering as bright, which I thought might be a good sign.

I actually convinced myself it was all good news. The mental cloud that lifted was huge. I could think about the future in a way I couldn't before. I felt like I could make plans.

Buuuut...then I heard from the hepatologist aaaaaand my case is going back to the tumor board.

Womp womp.

I am hoping it won't be a liver resection. I am not up for brutality like that again. I know I had it easier than many people, and it was still too much for me.

My asthma also flared with the last MRI. I don't know if it was the MRI or what, but I got really sick. I even had trouble holding my breath in the MRI, which I don't usually have issues. So I ended up on prednisone and am still not 100%. Naturally we went on vacation right after the MRI and that was pretty much a shit show. I stayed at the hotel the first three days, too short on oxygen to walk.

And if that wasn't enough...my kiddo is having issues with her neurological stuff. She was good for quite some time and now it's all gone kablooey on her. I'm working on getting her back into a neurologist. It's scary to see it happening again and I worry that maybe there was a misdiagnosis. Maybe they missed something. The neuro team we started with way back when was a bag of dicks, so I would not be shocked if they decided it was actually something else.

I told the ped we needed PT again, but they didn't register what I was saying. So I brought it up again and had to clarify it's a motor thing because they are used to it being more cognitive in presentation. I got the PT order, but now I'm asking for the neurology consult because things are much worse than when I first started asking for help.

End result...I don't know what's next. I don't know what plans I can make that won't be interrupted by medical fuckery. So I'm kind of stuck...not sure which way to go. Waiting.

I should hear from the tumor board later this month. As for the kiddo, I'm not sure how long it will take to get her into a neuro.

At least we met our deductible for the year! But then, we always do!