Tuesday, December 20, 2016

File That One Under "Gyro."

I don't know if it's mental/emotional fatigue from all the intensive medical stuff from the last four years or just how I'm wired differently, but when a surgeon tells me "about a week or more recovery in the hospital," what pops into my head right after "Can I see my daughter during that time" is "Is your wifi any good?"

Waiting to hear back on test results and analysis (and wifi answer!), chats between surgeons and doctors and oncologists, etc. File that one under "Joygasm." Or "Gyro," since I ordered one for lunch as part of my "food for the soul" regimen I tend to self-prescribe to after hearing troubling news.

No, nobody understands my filing system.

Monday, December 5, 2016

Imagine if She Could Read ...

I gave Ariana a pad to draw on months ago from my desk, not even really thinking about which one it was. Found this and 100 more drawings this weekend on the pad's pages while digging through her craft stuff and it just broke me. There's some annoying English class word for this ... allegory? Yeah, allegory. This is a perfect allegory for a day, any day, in my life, my personal version of the six-word story that I, ironically, didn't even write.

Clinical Trial News.

For those interested, this is the clinical trial drug I am taking (ACY-241) and the news from ASH this weekend about it. Celgene, who makes Pomalyst (and Revlimid, another big hitter in Multiple Myeloma) just announced in the last few days that they were buying this company. It's bizarre to actually read about a clinical trial you are in. Probably be more bizarre if the announcement was that 90% of the participants had spontaneously combusted or something.

Acetylon Presents Early Phase 1a1b Results for Citarinostat

Wednesday, October 26, 2016

Sleep Study Anecdote.

Ironically the worst night of sleep I've had in years was last night -- feel like midgets spent the evening slapping me in the forehead every time I closed my eyes. That should make for some entertaining results with this sleep study. Going to end up the poster child for something at this point.

Friday, October 14, 2016

I, For One, Welcome Our New Cyborg Overlords.

Getting a port put in today. I fought this for what, 3 years? Sick of getting poked and nurses not being able to find my veins easily anymore, but I had fought this until recently. I think something changed when I was in the hospital last month with pneumonia. I just feel defeated a bit, broken down. Tired of mentally fighting to pretend things could go back to normal, that this was all just a phase. Something about staring at those ceiling tiles, again and again, just broke down my resistance, until the thought of just not being stuck (or missed, as the case more often is) constantly got to be too much. 

Oh well -- on the bright side, I foresee a LOT of natural painkilling methods tonight followed by a sick UFC card on Saturday, so screw it, bring on the cyborg Rich.

Thursday, August 4, 2016

Monday, July 25, 2016

Almost Free ...

I get to leave! Waiting for paperwork now. The folks at PSL actually saved my life ... from another medical facility. Bizarre to be in a situation like that, but the folks here are awesome. And now I get some family time while the CBCI folks rethink some of my dosages in this clinical trial. So a week off chemo to heal some more, sunshine and the wife and kiddo. 

Thank you all again for the notes and stuff -- that has helped immensely through this.

Saturday, July 23, 2016

From Hospital to ... Hospital?

Got discharged from SkyRidge yesterday with wrong diagnosis which didn't end well. Amy drove me down to PSL today after coordinating with my oncology team -- this is where CBCI works out of. In good hands and confident we're on track to get me home safe, been a long goddamn week though.

Thank you all for the notes, visits and texts -- in a week I seriously thought was my last one it's meant a lot.

Monday, July 18, 2016

ICU at Sky Ridge.

Been in the ICU since Saturday at Sky Ridge when I was having trouble breathing and catching my breath. On the plus side it's not pneumonia, but they aren't sure what's wrong either -- best guess is sepsis (sp?). Been just laying here watching one organ after another freak out. That cancer life though! 

Damn near almost died Saturday night so that was certainly a life experience I won't be forgetting anytime soon.

Tuesday, May 31, 2016

Leaving New Mexico.

Another visit in the books. Beautiful day here and the new cancer facility is nice (and a hell of a lot closer to In-N-Out, so yay!). Missing the kiddo and wife though. Starbucks in the lobby is soothing my pain however.

Tuesday, May 10, 2016

Self-Prescribing some Marley.

There's pretty much only one thing to do when you've been sick for a week and hallucinating from the Mucinex overdoses, mentally / emotionally all over the place and trying to think through a Windows 10 clean install. Marley at the Stanley Theatre in Pittsburgh PA, 9/23/80, man.

"Forget your sorrows and dance ... forget your troubles, and dance ... forget your sickness, and dance, and dance, and dance, forget your weakness, and dance ..."

Tuesday, May 3, 2016

Clinical Trial Start.

So Cycle 1, Day 1 of the clinical trial.

Spent about eight hours at PSL waiting for Fedex to deliver one of the drugs, taking the drugs (14 pills, and then 3 later in the day) and then having an EKG and something like 7 blood draws (so they can see what's going on with the drug in my system, I guess?). No vicious side effects except a headache and this weird pain in my legs, both of which could be incidental or caused by shotgunning a quad soy latte when I was finally able to eat something 2 hours after taking all this crap. But not toxic CNS failure or anything so yay!

Mostly feel bad for Amy since I didn't notice until today that they upped my dosage of the corticosteroid they use (dexamathasone) back to the highest level, which in the past made me seriously roid ragey. We came up with a safe word tonight however in case I get out of hand, something like "I'll fucking shoot you if you don't calm down, you jackass."

Luckily she doesn't know where I hid all the ammo.

Thursday, April 28, 2016

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.

Saturday, March 26, 2016

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!

Tuesday, February 23, 2016

Deadpool on Cancer is Spot On.

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


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?

Monday, February 1, 2016

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.

Tuesday, January 12, 2016

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.