Sunday, January 05, 2020

I lied

So apparently there were still some outstanding chemo claims from September that didn’t get paid until January. Final tally is $546,186.70. I’m apparently worth half a million dollars. Go me!

Monday, December 30, 2019

Final tally

I’m a gambler, so I’m going to total up my medical expense for 2019 24 hours early.

Total billed: $545,589.49

Insurance paid roughly half of that, because they do magic math. I paid $5,539. My out of pocket max is $5500, but there was a dental X-ray they denied and are making me pay for. I suspect it was because it was only something like 360 days since my last one, not 365. Or something similar.

I really want to go on a rant about “health care” in the US. But it’s late, and I’m not feeling up to it. But, do know I’ve been a supporter of single payer for something like 15 years. Since the last time I dealt with this and realized just how fucked up our system is with private, profit motivated companies setting prices. Some people blame doctors, but IME, the doctors are motivated by caring for patients. And it’s not doctors earning $65million/year while denying care.

Speaking of caring doctors. My favorite doctor ever is leaving practice. I tear up thinking about it. Mentally, I’d accepted I’d be seeing him for the rest of my life. But no, it’s only 1 more time. *sob* After lots of stressing about it, I’m going to transfer to University of Maryland. Johns Hopkins is also an option, but I did not have a great experience and I also feel I kinda burned a bridge there. It just seems rude to turn a guy down for treatment and the come back and be like “can I keep you for follow up?” So, I have a couple recommendations an University, and all my other doctors are there anyway.  So it makes sense. And the best guy ever agrees.

Wednesday, December 04, 2019

DONE!!!! (again)

Last radiation was today. I did not ring the bell. The nurse asked if I wanted to and I gemmed a bit, then said I was convinced that someone from marketing would insist on it because of my name and the sign above their bell (“Ring in Hope”). The nurse got this gleam in her eyes like “oh wow, that is an excellent idea!” And then I said no. LOL

Anyway, K took half a day off to come with me. Partially it was an excuse to leave work because he has been run ragged recently. Like 75 hour week for 6 weeks straight. But it was nice. We went to lunch afterward.

He is happy an optimistic that this is it. I’m less so. Partially because the evidence is sparse on how durable a Brentuximab remission is. And partially because it wasn’t supposed to come back at all! So yeah, I’m not convinced this is it. But it’s it for this now. Last time, I moved on with life very successfully, to the point I argued with the doctors that it couldn’t possibly be back! Now... who knows. And we did kind of follow a front-line path, not full standard of care for a relapse. Trying to avoid transplant.

PET in January to confirm, and then on to the regular follow ups. I assume every 3-4 months for a few years and then backing off some. No clue how long I’ll keep my port this time. I bet about a year.

Friday, November 29, 2019

Here is the setup

Sunday, November 17, 2019


Its been awhile, and someone was bugging me, so here's an update...

I've made it through 29% of my radiation sessions, and I prefer the chemo chair.  I mean, its quick and its not like the treatment is painful.  But I'm locked down to a table for 30-45 minutes and I can't move.  On top of that, I have this annoying breathing apparatus to monitor my breathing so they can only zap me when my lungs are 70% full.  Being of a competitive nature, I tried to make it a goal to beat my last breath hold time, but then I get told that longer is not better, because you have to recover and we could lose the beam while I take an extra deep breath to return to normal.  Still, I try.  I've made it up to 42 seconds.  Each beam is about a minute, so I at least make it a goal to do each beam in 2 breaths.  And there are 3 beams.  Plus 3 x-rays they take beforehand to make sure I'm positioned right.

Since its proton radiation, the facility only has one proton generator.  But there are 5 treatment rooms (only 3 work).  So the proton beam rotated around.  Which is why they don't want delays when we have the beam, because we could lose it if I'm not ready. 

Oh, and since I can't move, my bum is getting numb from the pressure points.  I can' even adjust my legs b/c it could make my chest 1 cm different than before,  So its claustrophobic from being locked down in a mask and hooked up to a snorkel, uncomfortable from pressure points and being unable to squirm.  Also, cold, because its a medical equipment room. And every day I have to drive downtown, park, and be there for about 1.5 hours. *grumble*

In other news, one of my twitter friend died this week.  A stark reminder of what its like in the cancer community.  This happened a few times during my last stint in this world, but then I was just on a hodgkin's email list and the blogosphere.  So I was mostly connected with other young, hodgkins people.  Now, I'm in the cancer twitter community.  And there, I've mostly connected with other middle age women.  So, not really other hodgkins patients, but mostly breast cancer.  Melissa had colon cancer.  She was 38.  Just recently, she posted a picture with her family and looked so happy.  But, cancer it a bitch.  RIP Melissa.  And Terri - I still remember you.