Rain and GUSTY winds today. No running. This is sad. It did kick me in the shorts to spend some time organizing my “medical binders”. Yes, I have plenty of digital copies of all of these things. However, sometimes one finds, that it is nice to have the old school paper materials on hand for quick reference in one location… oooooor… pulling out and popping up a copy within seconds. So yes, I am anal retentive with my system, but I have good reason… other than the “brain-fried betty” default. **drops cancer card** Dealing with cancer is like running a business. I think we should start an online “Cancer University”, with classes like:

  • Medical Billing – How not to lose your mind or your temper
  • Logging into your Patient Portal – class recommended for those who still have a blinking “12:00” on their VCR
  • Reading blood labs – What are all these goofy acronyms?
  • Viewing CT’s and MRI’s – Is that blob supposed to be there or not?
  • How to schedule appointments – must have prerequisite “Herding Cats 24/7” prior to enrollment
  • Dealing with health insurance – What do you mean this isn’t covered? How to make them pay.
  • Fact or Fiction – The differences between a peer reviewed abstract and your cousin’s brother’s friend’s sister’s aunt’s YouTube theories.
  • Getting a second opinion – Finding doctors who are super intelligent, but not egotistical a**holes
  • Developing the right mindset – How to say the word “No”. How to use your cancer for humor and shock value. How to laugh off “muggles”.

It might also be useful to have some basic math, science, and psych classes in there as GE courses. If anyone has anything I’ve missed, please feel free to send it along.

Now that my “books” are in order… here’s what’s been going on ——–>

Yes… that is my brain

BRAIN: Despite the rising number of COVID cases cropping up around the LA area, we took the opportunity to see my brain genius in person this time around. Let’s face it, the hospitals are far tighter with safety protocols than any local grocery store or gas station… sooooooo… not much risk taken with this visit. As a special bonus, we got to see a few of my “gamma crew” during this visit too! This actually was a double fold treat, when “my math man” (aka the unit physicist) pulled up the overlays of all of my previous MRI’s, and gave us a short lesson on how the mapping is done to determine what is new, versus what is “old news” on brain imaging. Not gonna lie… we did geek out a little at the technology… and the images of my cranial contents.

Speaking of the contents. I still have a brain. YAY! It’s still visibly “damaged”, but otherwise seems to be functioning well enough to keep my KPS at a top level. On the most general level “nothing new to see here”… all “old news” for those familiar with what my brain looks like.

FINDINGS: Postoperative changes from prior bilateral temporoparietal craniotomies are again seen with areas of gliosis and susceptibility artifact in the temporal lobes suggestive of posttreatment changes. Multiple foci of treatment-related change and microhemorrhage corresponding to areas of susceptibility/blooming artifact, involving the bilateral cerebral hemisphere are stable. A curvilinear focus of enhancement in the left occipital lobe is less apparent on this exam. No new areas of enhancement identified. Stable posttreatment changes with no new areas of enhancement to suggest recurrence.

Bring it…

BODY: Due for a routine follow up “neck to knees” CT in the next 7-8 weeks. Aside from the still missing lung lobe and pancreatic cyst, we’re not expecting to see anything new. In the meantime, I had a surface check with the rockstar derm. He froze a spot off the back of my leg. Things healed up all lovely with fresh new skin, so no panic there, just “surface junk”. New to the team, is an amazing lady doc for my lady parts. All of my docs are pretty freakin’ amazing! They’re also all wonderful listeners… but this woman has an extra level uncanny ability to take mental notes and spill them back into clinic visit reports with absolute accuracy and full detail. Anyway… good news on the pelvic front too! I know you’re so thrilled how I overshare this! Ovarian cysts are gone. Fibroid on the “baby baking bag” is stable, and the inside lining is pathologically confirmed (in simplified terms) as “normal”. Sooooo… the horrific hot flashes during October and November can now be chalked up to “pre mental-pause” (yes, that’s intentional spelling) and/or the blood lab findings that my thyroid meds needed to be decreased.

Sooo ready to take the shot

February, March, April, and May ALL have some form of medical appointment involved. I swear, I’m getting to be like one of those old cars that starts leaking oil, having unidentifiable squeaks and rattles, and shining a chronic “check engine” light. Needless to say, I’m doing my best to salvage the remaining parts while continuing to improve performance. Eat right, ignore political “discussions”, run, run, run some more, and keep eyes and ears open for my soonest opportunity to get a Covid 19 vaccination.

Hope you’re all doing your best to stay healthy (mentally and physically), appreciate the little moments (the big ones are obvious and almost too easy) of sparkle, and making an attempt to be nice every day. Pet some dogs. Talk to neighborhood cats. Feed the birds. Being the joy, brings the joy. Just sayin’.

Niki News January 2021