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 ..."
"Forget your sorrows and dance ... forget your troubles, and dance ... forget your sickness, and dance, and dance, and dance, forget your weakness, and dance ..."
Thursday, May 5, 2016
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.
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.
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!
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
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?
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?
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