Hi

So my plan was to keep this up as a Coronavirus, pandemic journal. Best laid plans and all...

I have managed to calm down since my last post. I didn’t leave my house/yard for 6 weeks, and the decided that was enough. So, while I’m still mostly at home, I do go out and about some. Probably more than is truly “essential,” but sanity needs to leave these four walls occasionally.

K is still at the other house. He stops by about twice a week to exchange the car for the truck for weekend work. No real clue what’s up there. Someday we will have to figure out what’s behind all that.

Blah blah, life goes on. I suspect this will go dark again. Hopefully I’ll never have to resurrect it again. I mean, I have a ton I could say, but I feel like this circa 2004 layout and everything is just not the right format. I’m still kind of amazed it was never hacked in the 15 years it was dark.

Coronavirus

In keeping up the theory of this serving as a medical history/time capsule of my life, I’m going to ramble about Coronavirus/COVID-19.

Basically, it boils down to be me terrified. Despite having cancer twice, plus the stroke(s) - this is what has put the fear of death into me. I read the stories coming out of Italy, Seattle, etc, and I realize that as a middle-age, overweight person with a recent history of cancer, I end up at the end of the triage line. On top of that, last I saw, I still had low lymphocytes. And hell, it was a immune system cancer. So shit. I’m like triply fucked...

For this reason, I’ve hunkered down and am not leaving the house for the foreseeable future. K has moved out. He is living/working on our other house for the same foreseeable future. We plan to see it when he’s done. There are other issues at play, too. So no, I don’t know if we are OK. But, between the need to get that house painted and his service job interacting with so many people, there was a reasonable excuse to quarantine us apart.

I feel like I want to write something fun and witty, but I don’t have it in me.

STAY HOME PEOPLE!

Is there anybody out there...

Just nod if you can hear me,
Is there anyone home

Well, if you haven’t heard otherwise, my most awesome doctor ever left practice at the end of January. This upset me a *lot* because it seemed he really got me, and he was willing to discuss things with me and talk to me like an equal. Definitely not a neurologist...

After some tears and days of mulling over what to do, I decided to transfer to the University of Maryland comphrensive cancer center. My thinking was two fold, I probably should have been at an NCI center all along and, I know if things don’t work, I’ll end up needing a transplant and that will have to be at at NCI center. I suppose I could have gone back to Johns Hopkins, but... I didn’t like my doctor there. He didn’t laugh at my joke and, while nice enough, was more paternalistic than I like.

A few night ago, my anxiety got the best of me, and I started believing the new doctor would want to do a transplant on me. The exact things we’d been working to avoid.

I am happy to report that did not happen. I met the new guy today and he agreed transplant was not on the table. His theory was that this was a new lymphoma, not a relapse of the old one. And for that reason, he was happy treating it like we did front line. And I’ve read that theory before, too. He just wants to follow me like he would if we just finished front line treatment. Yay! He said he contemplated giving me a bit more chemo, but changed his mind since it was very localized. The one thing that is water under the bridge now, if he would have continued chemo vs doing radiation. But what’s done is done. He was even confident enough he’d pull the port out.

So yay!

And I’ll probably keep the port as long as the local place keeps letting me go for flushes. At some point they may realize I’m not seeing any doctors there.

Tales from the data free zone

I guess I’m now a published cancer author. At least a small time essay LOL

https://www.elephantsandtea.com/patients/tales-from-the-cancer-data-free-zone/

You all know the story, most of it’s here, back in May and June archives. And 2004/2005...

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!