Kind of a craptacular August that didn’t really prompt me to go running for the parchment and quill. The Carfilzomib / Prednizone / Pomalist/ Cytoxan really was about as effective as the Dutch boy’s finger in the dike.
Get your minds out of the gutter, Jesus.
By that I mean my numbers didn’t go down, but they didn’t go up. Which depending on how you look at it is either cool or sucks. I’m more in the “sucks” camp because I can feel the Myeloma more now. Certain pains when I get up after sitting or laying down for a while, my inability to get my socks on again … I’m just hoping against tumors. I really, really, REALLY do not want to go get zapped again, especially because it’s my inner thigh muscles that feel odd and having to lay there naked while ridiculous hot nurses write on my body fucks badly with my head.
Also as long as there’s myeloma in your system, it’s doing damage, not just hanging out playing bridge. Every day my bones weaken a bit more, I take another step towards renal failure or some other organ damage, etc.
And the mindfuck of all mindfucks is I look great, and outside of the pain I mentioned earlier I feel great. Whereas a month ago I would have seriously considered suck-starting a shotgun if I didn’t have a kiddo (and hadn’t given my step-father all of my guns). So bizarre. I really am hoping the psychiatrist at CBCI shows up as we discussed in the — oh, I forgot to mention that. So that combo of chemo drugs beat the ever-loving shit out of me. I had weeks I couldn’t work, I could barely get out of bed, etc. Got a temperature of 104° one night so I got to spend yet another mini-vacation at PSL. I had two amazing nurses there for several shifts whom of course I forgot the names of. Fuck me, that’s terrible. Oh well, you two know who you are if you actually followed the link. Thanks again. Late-Night fix, one was named Julia.
Anyhow so I get out of the hospital and like a day later I’m flat on my back. Zero energy, still coughing shit up, finished course of antibiotics and no fever. I sleep it off for a few days and then my wife takes me into CBCI where they check me over and do labs. I’m in a wheelchair barely able to keep my eyes open I’m so exhausted, and I have no idea what is causing it. Nor do they, as it turns out. At that point I’m assuming this is just the end, and that sucks because I need energy to do the last few things on my to-do list before I kick the bucket.
They prescribe another week of one of the antibiotics they had been giving me in the hospital. I decide on my own to pop an Oxycontin 60 mg, which I had been taking regularly for months but seeing as how I wasn’t in pain I just stopped taking.
So it’s around Thursday and I have an appointment for Friday and that evening I just get out of bed and go get something to eat. Then something else. Then I drain a few mason jars of water (don’t ask). And just like that, I’m fine. I email the nurse coordinators with the news and the fact that I popped that Oxy and Friday at their office they tell me it definitely could be withdrawals from the Oxycontin and we’ll start weaning me off that.
The wife is plugging through her nursing school — it’s an accelerated program so they are working her over like a guy caught cheating at a casino in Vegas. The benefit of that, however, is I get to pick my daughter up twice a week from school (she gets to show off her daddy’s candy apple red Mustang) , we have dinner together (watching a movie usually), and there’s no drama or tantrums or anything of the usual problems because I don’t tolerate it. Tonight we’re going out for Chinese, I think.
I have a doctor’s appointment on Friday, and apparently on Monday we’ll be restarting that damned chemo mix again. I’d like to know what happened to the Selinexor again, and I also have some questions farmed from Twitter about CAR T clinical trials for people who have failed a CAR T trial. That might be interesting.
I don’t think a normal could sleep for 48 hours without medicinal help. It’s impossible to explain, then, what it’s like. How it can take 10 minutes to get a sip of water from the nightstand next to you as you stare at it, as still as a hunting cat. And the DREAMS, my God. At least on the Internet you can turn things off or yank a video cable out (although really the back button is a better choice), but I could write a book of shit I will never be able to bleach out of my head.
But there was one that stood out, something so sensual and magical. I’m lying on a bed covered in various soft sheets, just a pair of shorts on. She lays on top of me in the lingerie she just bought, the silk tickling my back and the feel of her nipples as she moves sending me into a new spiral of sensuality. I marvel at the tattoos on her arm as she passes me the joint, taking a giant hit and not caring so I take another. There’s always more. Her arm rests on my shoulder, the finger tattoos spelling something I can’t quite remember . She moves, sitting up, and I see her bra flung across the room onto a pile of clothes she calls her closet, my attention split between the amazing way the smoke dances, the inability to understand how people manage laundry like that and the reality of her and I …
And then I hear something akin to a SWAT battering ram blast into my bedroom doors as a normally tiny almost 7-year old voice runs into the room and shouts like R. Lee Ermey “MOMMY DADDY MOMMY DADDY IT’S TIME TO GET UP!” Right as a puppy flies out of nowhere onto the bed and starts licking my nose.