“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?
Tuesday, February 23, 2016
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.
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.
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.
Thursday, December 10, 2015
Friday, February 13, 2015
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 ...
Monday, December 1, 2014
Post-Thanksgiving Update.
I guess I can't really avoid this place anymore -- certainly tried over the last month, but it gets kind of silly to not blog at least once a month for something like this. As I was trying to explain to my wife, and think I did at some point to my therapist, is that I can generally cope with having myeloma if I can focus on the short-term, the present. It's when I start thinking about the future that things start racing downhill, and it's hard to avoid that when I write.
I ended up lowering my dosage of Revlimid in September to 15mg from 25mg. I find out in a few weeks how that has gone -- the first cycle I did of that treatment the numbers dropped, but not substantially. I'm hoping the numbers from the next blood test are better, since I feel like I've paid in blood for them. Felt like hell for almost a week with some neuropathy and a ridiculous amount of fatigue. I go back to Arizona on the 16th so I'll get their opinion as well.
I'm probably switching local oncologists here -- getting tired of the minor and major annoyances and outright fuckups I've had to deal with lately, culminating in spending 2 hours in one of their offices for a simple CBC test because some orders were put in wrong. With the Mayo Clinic directing my care anyhow I'm less concerned about having the best local person I can find than finding one who can make my life easier, not harder. Cancer's stressful enough without your oncologist making it worse instead of better.
It's a strange thing that I think most people with diseases like this must deal with -- whenever something goes wrong it's hard not to think "Jesus, I already have cancer, what now?" or something similar. A lot of times that's just the pity party talking, but in some cases, like, well I dunno, DEALING WITH A GODDAMN CANCER CENTER, you'd hope people would step a bit beyond the "this is just my day job" attitude and get the work done properly. It's not just about giving people drugs.
And I'm checking out some supposedly amazing alternatives. We'll see what happens.
Mentally and emotionally the last month has been a roller-coaster, from the trip to Arizona through the vacation I took with my wife and daughter. It was hard being in Scottsdale again, alone. It felt like driving through a memory as I went through the neighborhoods I stayed in for months during the transplant. And not a very good memory, at that.
At the start of November I took a vacation with my family, a Disney Cruise. When your white blood cell count is low that seems like the worst idea you can have, and I'm not sure it wasn't, but the cold truth is that not knowing if you'll be alive next month or next year tends to affect your travel planning. If I go downhill tomorrow, in other words, at least I got to do this trip with my daughter.
Who won't remember it, and was somewhat bratty all week, but whatever. I tried.
Pondering ending my therapy (mental) this week when I go in -- I'm not sure I'm getting enough out of it at this point to justify the cost, the time, or what it's taking out of me emotionally to dig stuff up, and we're not really so much doing therapy in the sense I'd understand it as I am just unloading so I avoid doing it to my wife. In the end I have a terminal and somewhat unpredictable terminal disease, and that's pretty fucked up. I have narcissistic people in my life I can't really avoid dealing with, and that's pretty fucked up too. I have a daughter that I adore but I worry, daily, I am going to mentally destroy at some point due to my untimely death from this goddamn cancer.
And that's the most fucked up part of all.
I ended up lowering my dosage of Revlimid in September to 15mg from 25mg. I find out in a few weeks how that has gone -- the first cycle I did of that treatment the numbers dropped, but not substantially. I'm hoping the numbers from the next blood test are better, since I feel like I've paid in blood for them. Felt like hell for almost a week with some neuropathy and a ridiculous amount of fatigue. I go back to Arizona on the 16th so I'll get their opinion as well.
I'm probably switching local oncologists here -- getting tired of the minor and major annoyances and outright fuckups I've had to deal with lately, culminating in spending 2 hours in one of their offices for a simple CBC test because some orders were put in wrong. With the Mayo Clinic directing my care anyhow I'm less concerned about having the best local person I can find than finding one who can make my life easier, not harder. Cancer's stressful enough without your oncologist making it worse instead of better.
It's a strange thing that I think most people with diseases like this must deal with -- whenever something goes wrong it's hard not to think "Jesus, I already have cancer, what now?" or something similar. A lot of times that's just the pity party talking, but in some cases, like, well I dunno, DEALING WITH A GODDAMN CANCER CENTER, you'd hope people would step a bit beyond the "this is just my day job" attitude and get the work done properly. It's not just about giving people drugs.
And I'm checking out some supposedly amazing alternatives. We'll see what happens.
Mentally and emotionally the last month has been a roller-coaster, from the trip to Arizona through the vacation I took with my wife and daughter. It was hard being in Scottsdale again, alone. It felt like driving through a memory as I went through the neighborhoods I stayed in for months during the transplant. And not a very good memory, at that.
At the start of November I took a vacation with my family, a Disney Cruise. When your white blood cell count is low that seems like the worst idea you can have, and I'm not sure it wasn't, but the cold truth is that not knowing if you'll be alive next month or next year tends to affect your travel planning. If I go downhill tomorrow, in other words, at least I got to do this trip with my daughter.
Who won't remember it, and was somewhat bratty all week, but whatever. I tried.
Pondering ending my therapy (mental) this week when I go in -- I'm not sure I'm getting enough out of it at this point to justify the cost, the time, or what it's taking out of me emotionally to dig stuff up, and we're not really so much doing therapy in the sense I'd understand it as I am just unloading so I avoid doing it to my wife. In the end I have a terminal and somewhat unpredictable terminal disease, and that's pretty fucked up. I have narcissistic people in my life I can't really avoid dealing with, and that's pretty fucked up too. I have a daughter that I adore but I worry, daily, I am going to mentally destroy at some point due to my untimely death from this goddamn cancer.
And that's the most fucked up part of all.
Monday, September 22, 2014
Back in Scottsdale.
Sitting in a hotel room less than a mile from the Mayo Clinic, having already done my blood work appointment and trying to fill up the time until I see my doctor tomorrow. Then home again.
It's been a long, hard month. One of the big things I have to discuss with the doctor here is changing my chemotherapy regimen somehow -- both I and the Denver oncologist believe it's too damaging to my immune system. I've gotten sick every month at the end of the cycle since I started the Revlimid, culminating with 5 days in the hospital this month when I came down with bacterial pneumonia. Either the dosage needs to change or I need a new drug, I guess.
It's been a long, hard month. One of the big things I have to discuss with the doctor here is changing my chemotherapy regimen somehow -- both I and the Denver oncologist believe it's too damaging to my immune system. I've gotten sick every month at the end of the cycle since I started the Revlimid, culminating with 5 days in the hospital this month when I came down with bacterial pneumonia. Either the dosage needs to change or I need a new drug, I guess.
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