Accepted Into a Clinical Trial.

Having now had 5 different chemo therapies fail and watched my numbers round-trip to where they were almost three years ago, my docs have recommended a clinical trial. Got the news that I was accepted today (been doing tests for a week) so I start Tuesday. Seems a little surreal and somewhat scary since I thought we had a bit more of a pipeline to go through before getting into stuff like this. Ah well -- the things you do and put up with to stick around a bit longer for your kiddo.

Can't help wishing this trial was testing the efficacy of Pomalidomide with cheesecake and a latte instead, tho'.

Trial Information for ACY-241.

Pneumonia Again?

4 am in a room at Sky Ridge (pneumonia again). Weird how your bucket list goes from international diving destinations to "hospital with ok food." 

Which I missed tonight but goddamn was that a good popsickle!

Deadpool on Cancer is Spot On.

“Deadpool” gets cancer right: Debunking the “hero” survivor myth, one smart-aleck joke at a time

A-fucking-men.

There is not much more depressing to me, and other folks with cancer I talk to, than the pressure and sense of failure that comes with not being one of those "Since I got cancer I've climbed Everest and become a marathon runner and only eat vegan and quit my job to become a blah blah blah ..." I wish "they" would get rid of that unrealistic model because you really do notice if you're not that person, not only personally but in others' reactions. Shit I consider a heroic day if I can get by with only two venti lattes to keep from falling asleep while driving thanks to the drugs they have me on and the disease itself so I can get home to play with my daughter for an hour while hopefully no needing a nap during my quality time with her. While hiding tears because I'm terrified of what my likely death from this is going to do to her. Add that to feeling guilty about being a shitty friend and husband because I'm so tired and so introverted now it feels like the effort is just more than I can handle, constantly having to break commitments, having to give up everything I cared about doing in life like travel, diving and teaching diving thanks to a suppressed immune system, getting to witness my brain deteriorate from chemotherapy ("chemobrain"), weight gain from the meds, you name it.

Guess you don't get a cape for that stuff, though, right?

New Chemo (Ninlaro)

Chemo regimen number three ... adding the recently FDA-approved Ninlaro (Ixazomib) to Revlimid and dexamethasone. A dry chemo that brings to mind rich floral, earthen mineral and cedar nuances with just a hint of dark cherry fruit. Just kidding, it tastes like death and coffee, and the latter only because I chased it with a latte. 

Here's to hoping this witch's brew works because this routine is getting old.

That Dragon, Cancer.

In case you thought all games were some version of World of Warcraft or Call of Duty.

And a tiny wish, worth whatever those are worth, that you never have to open the Pandora's Box of cancer for yourself or, even worse, in a child.

Interesting Article.

An interesting, albeit disturbing, book review:

Tough Medicine (Newyorker.com)

A Reality Check.

Sorry, as usual, for not updating more.  The holidays were terrible and caused so much stress (family stuff) that it felt like all I could do just to survive, much less dwell on everything else.  I think I mentioned it in the last entry, perhaps not, but my mental health effectively waxes and wanes with whether I can keep the emotional walls up and not really think about the horror of this diagnosis.  When other things damage the wall, it all comes flooding back.

Nothing much is new, other than a better yet sadder understanding of those around me.  I wrote a letter to a parent that I never sent to clarify my thoughts, and realized it would suffice as an entry here for now.  Life is OK, or as OK as it can get when you just step around the elephant in the living room and try not to acknowledge it's existence. Anyways, a portion of that letter ...