Goodbye, my friends.

This is being posted by Amy, Rich’s wife, at his request. 

On November 27, 2018 I died.

Yeah, that’s it folks. I fought this fucking disease as long and hard as I could but it’s over.

The ironic thing is that in having multiple myeloma I learned what life really is about for me and how to be a good human being. Unfortunately, and again thanks to the multiple myeloma, I wasn’t able to do much with that knowledge with what little time, energy and almost constant pain I was left with, and due to the damage the drugs had already done.

Fuck you, Dexamethasone.

I don’t leave a lot of regrets behind with one exception that those of you who’ve subscribed to my words over the years should know by now … the experiences this disease has stolen from me from having with my daughter, Ariana. I’ll admit it, I’m a little afraid of death, but I’m more just devastated that I won’t be there for her any more, won’t be able to answer her questions about life and how to do things, etc. The pain of that, the seeming unfairness, has haunted me since I was first diagnosed and never gone away — which you know, again, if you’ve read along with me as I chronicled this nightmare.

I wish I had something pithy or deep to say here, but quite honestly the pain of writing this is so severe that outside of more f-bombs I have nothing for you.  There’s no deep lesson to be learned from a terminal disease. This is not “God’s Plan” or some other religious safety blanket you tell other people but never really believe yourself. This is just double 7’s on the dice, and I lost. And so did those who loved me.

Thanks, to those of you I interacted with and who read my words, especially those who took something from them.  Although they were mostly for Ariana they were for you, too, and I appreciate your patronage and friendship.

So goodbye, and if you ever meet an Ariana Stark tell her her daddy loved her like nobody’s daddy ever had before.

Dancing with the Dead.

It’s been a weird month. Granted they’re all weird months when you’re terminal, but for whatever reason this one especially so.

Almost every night for a few days now I’ve having really vivid dreams that include people from my past who are dead.  This morning I woke up and it took me a good five minutes to realize who my daughter was or why she was there, as I was laying in bed with a friend who had died years ago from cancer. They’re all like that. Bizarre.

This is now the second week of being on Selinexor. My doctor managed to get me the drug via the compassionate use deal, which is pretty crazy. He said the company was awesome to work with, though, constantly asking what they could do to make it easier, etc., so props to Karyopharm. That’s no bullshit either — I hope this works for obvious reasons but I really appreciate their attempt to keep me around for my daughter for a little longer too. I’m not sure when we do the next MM tests but my fingers are crossed.

Not sure what else to talk about, really. I’ve felt like Hell all week and just been dealing with 1,000 little petty things, stupid things, useless things. Certainly nothing to get into here. I just game, hang with the kiddo and try to stay alive through it all.

Literally.

Dreams and Poison.

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.

Bizarre.

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 …

CRAAAAAAAACKKKKKKBAAAAAAAAAAAMMMMMMMMM!

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.

Oh well.

Mental Sewage.

Another day passes.

I was supposed to begin the second cycle of my current chemotherapy today (Cytoxin, Carfilzomib and Prednisone) but I’m so beat up that Dr. Matous is giving me a week off.  We’ll find out mid-week how effective the first cycle has been.

I’ve been withdrawn, well, really in a lot of ways since I got the bad news about my CAR T results from Nashville.  I hadn’t realized quite how much hope I had put into that whole deal until it came crashing down. I know I’ve harped on it here a few times but I keep coming back to it, the day hope died for me. Now I just feel like I’m a one-person time-bomb who can’t see the timer. Place your bets, kids, there’s plenty of squares left.

I set little goals for myself, morbid as they are. I had to live through a week ago because I closed on a refi that completely got my family out of debt, so there won’t be any hijinks when I’m gone. I have to live through the 5th of September because I redid my will and all of the trusts I just set up for my family need to be signed for. There’s more, a mental list, but I’ll be honest — they don’t go too far out. I feel too fragile for that and certainly that has played into a despair I can’t shake.

I’ve only slept well in the last month the last two nights thanks to taking 50mg of Benadryl  at night (with a Xanax chaser and a toke or two some nights). Probably not the smartest chemical diet but there’s this weird place you get when you’re terminal where safety just gets put aside. Seat belt? Laugh. The only reason I wear one anymore is because the beeping annoys the shit out of me. Mixing Opiods (Opiates? Whatever, screw your accuracy)  and Xanax and pot? Well, maybe one of them will knock me the fuck out so I can stop thinking and get 4 hours of sleep. Yes how terrible it would be if I didn’t wake up and cheated cancer of slowly eating me alive for another unspecified period. Or hell, just so I could GET to sleep and shut my goddamn brain off for 10 seconds.

SO I CAN STOP THINKING GOD DAMNIT.  CAN’T YOU UNDERSTAND?

My brain is my worst enemy. Sure the cancer’s killing me but my brain is running the Howard Cosell constantly (not with his accent, but you know what I mean). It’s ruined me, and really THAT is the battle with cancer that I’ve lost. I mean you get cancer and you’re fucked, we all know that. At some point you’re just going to lose, odds-wise. But what makes is truly miserable are those voices in your head. My personal favorite is the constantly-repeating image of my daughter screaming “I want my daddy!” after I’m gone. Over and over and over and OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER … get the point yet?

I don’t know how to put that aside. Over five years of this disease slowly sapping away my life, my sanity, my personality. It’s not really how I wanted to be remembered, a shell of a human, but it seems like a one-track destination. I’m zombie’ing days away just trying to live another day.

And for what?

Well, for who, you know that Rich. But at what point do you become the albatross you used to write about? To everyone, to everything you know?

I feel like her defender lately, as if I suddenly understand her better. We’ve built this bond recently. Of course that can be a double-edged sword.  I asked my daughter last night why she told her mother she didn’t want to go for a walk with her and she told me “because mommy didn’t break her spine, or spend all that time in the hospital, and I didn’t want you to be lonely.”

If she saw the tears she didn’t say anything. I’m so glad I got cancer so I could have moments like that with my child.

Anyhow her mother is frustrated with her and a little short-tempered lately. Ariana is in a “phase” I guess. That’s one of the other fun problems with cancer the pamphlets don’t tell you about, kids. See our daughter’s therapist believes some of her acting out comes from my illness. So I get to see, firsthand, how I’m fucking my own kid up. I can’t tell you how awesome that is. Even though I know some of it is in fact just a phase.

But she and I are closer lately, anyways. Mostly because  I sneak her Blow Pops that I order on Amazon and hide in my desk. What the hell do I care? At least she can remember a daddy that broke the rules when her mother was gone to share a sucker with, I guess. I’m fighting for the inches now, praying she’ll remember this or that, or not this or that as the case may be. It figures that the exhaustion from the drugs and disease is so strong, so that I can’t even fully  enjoy these last moments. Not with dad, the gimp. He can’t feel his feet anymore or get out of bed half the time. Quite the epitaph.

Ironically my weight is at a nice spot now, although between the fact that I shave my head and the gaunt look to my face lately I feel like a double in Schindler’s List. I just don’t feel hungry anymore, except for the frozen fruit I take to bed at night as a snack. It scares me sometimes because I know I can’t heal without sustenance, but I just don’t want anything. Hell I’m taking a Zofran a day right now just to combat nausea, the last thing I want to do is eat.

So none of my clothes fit and I look like an idiot now. *thumbs up* I can’t even wear stuff I wore on my honeymoon without a belt, which is impressive (and shows you how often I throw shit away, since those haven’t fit, since, well, the honeymoon). On the bright side I can take my pants off without unbuttoning them. On the not-so-bright side if I don’t cinch my belt tight enough they do that when I’m walking into my office building.

Maybe I’m just pissed because I’ll be dead before Cyberpunk 2077 comes out. You never know with me.