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.

Zzzzz.

Tired today.  Woke up late, slept through my chemo appointment (I was there, just zonked out on on of the infusion examination room bed for most of it), and now back at the office.  The nurse asked me if I was going home to rest now and I told her nope, back to work.  She seemed disappointed, but not as much as I was.

I wonder idly sometimes if some of these therapies would have worked better if I hadn’t had to work so hard or deal with so much drama and bullshit while dealing with them. After five years I’ve grown this tremendous “tumor of envy” if you will for people who get to just focus on this damned disease and living life, instead of pitying myself for my own situation. I feel like it’s made me bitter, at least to an extent. Like it’s taken away something.  Energy I could have spent with my daughter, or on my marriage.

I’m afraid a lot more, now. Not going to get into that right now though.

This weekend I went with my wife and daughter to the Douglas County Fair. I grew up going to stuff like this as my parents rode horses, but it was Ariana’s first experience with 4H and all of the games and cheap rides. Her and I did a ride together, and then I gave the rest of the tickets to our friends so their daughter could do some with Ari. She won a pink translucent dolphin and had half a bag of cotton candy (mom’s limit) before we had to go. I bought her and her mother cowboy hats as well. I probably shouldn’t do things like that but every time she wants something I wonder if THIS is the thing she’ll remember.  If someday she’ll sit in her room, quietly thinking about me and fondling that hat that no longer fits, remember something about me.

Such dark thoughts to have. People don’t realize when it’s not a reality for them what this existence is really like. They think they do, with their useless platitudes and empty gestures and comments. They have no idea, none.

My feel were killing me most of the time at the Fair, but I went anyway knowing they would. Maybe that’s Myeloma, at least to me. A decision … whether to participate, regardless of the number of crosses on your back and their weight, or whether to skip living. Most of this illness I’ve chosen the selfish route, to skip it, but as I come to what I feel like is the end (or at least more of the end than it used to feel like) I feel less inclined to skip things. I realize how much I’ve missed, and damn myself for it. I had a choice, and I chose wrong. Now I fight just so that my daughter remembers.

I’m tired. And it’s a tired that never ends.

Screw “hope.”

How’s that for a title to set the tone?

I’m not that anti-hope, really.  It’s just … man everything is making me tear up today, and I’m fighting off a serious depression which I always find awkward. Hiding the sniffles and pretending it’s allergies or just “nothing.” Trying not to think about anything remotely sad (impossible for me, since even kindness makes me sad on days like this). Work is kind of a shitty place to just have tears start rolling down your cheeks.

Been like this off and on for a few days now. I don’t think it’s so much drug-related as just a hardcore realization of where I’m at in life, where I’m going, and how much it all sucks. I guess better this way at the start of a new chemo regimen than all hopeful just to subsequently get emotionally crushed like a bug like I did by that clinical trial though, eh?

Started up a new chemotherapy this week — Carfilzomib, Cytoxan and Prednisone (I refused the Dex so we substituted that). I can already feel it in terms of fatigue; the last two nights I have gone to bed pretty early and slept great, but can’t get up. After five years of this you start noticing little things about your body a lot more than I think normals (those of you without cancer) do. There’s something different keeping me from waking up in the last two days, I can just tell.

My shoulders are still a hot mess — I don’t see any way around getting some x-rays or something done as they hurt constantly and my range of motion is severely shortened. Feet are still numb, and I’ve noticed on our nightly walks that if I walk too far the numbness starts creeping up my legs until I feel like I’m going to fall down. My knees and hips feel extremely weak at that point too. In the hopes that this has more to do with not getting a ton of exercise or something I’ve still been going on the walks, but I’m concerned. And it’s typical — it’s not bad enough that my mind is ripping me apart, waves of depression taking down the wall I’m frantically trying to fend it all off with, but then I get these pains and aches on top of it all.

Because I’d feel pretty decent right now if it weren’t for the shoulders and feet/legs, and we can’t have that. Oh no, no respite for Rich.

Sorry … that’s dipping into the self-pity a bit much. Which I’ve been doing a lot lately, I realize. I can’t help it. Still blown away that I got no results from that clinical trial, in disbelief after all of those trips and tests and hospital time and uprooting my family that I got NOTHING from the bleeding edge of cancer research. It’s hard to explain how disappointing that is. I try, but it’s like trying to explain a color or smell — people just don’t get it. Not sure I do either. I was so sure that was the answer that I allowed hope to creep in — let myself imagine me doing normal life stuff again, whatever that means.  Vacations, things with my daughter, diving.

And it hurts seeing others getting amazing results.  I’ll admit it.  I just wanted to have some too, sorry. I went through all of the same stuff, how come it didn’t work for me?

*sob*

As any terminal can tell ya’, “hope” sucks. Hope ruins you. Because we’re always one test away from hope destroying us, you see?

Maybe you don’t. Probably better you don’t. I envy people their ignorance of this world. All I know is I allowed hope to enter my thoughts again and then got destroyed, and I’m still reeling from it to the point that I can’t even find it in my heart to be happy for those it’s worked for. And that sucks, man. It makes me feel like the shittiest human being ever. But I can’t help it. I wanted more time with my daughter, don’t you understand?

I should probably end this there if I wanted a clean, pithy blog entry, but I have all of these random thoughts in my head.  The only one that appears at the moment, however, is how this week Facebook reminded me it was my friend Julie’s birthday this week. Except Julie died a year ago from cancer. I guess nobody ever adjusted her FB page or anything you can do when someone on there dies. It was quite the brutal slap in the face, though.  RIP, you.

Had a friend in town this week offer, when she heard I had chemotherapy on Monday and Tuesday, to drive me to one. Was amazing just having someone there to talk to, someone who I knew cared, to take my mind off things. I always would see people with friends in infusion centers over the years of doing this and quietly sigh that those closest to me (wife, parents) never really offered (at least that I can recall, I think my wife went in the early days a few times but my memory is totally shot at this point). Ever the pragmatist I just kept quiet about it — plus there’s no way for that request to not sound guilt-trippy. But it always bummed me out, so after five years it was a nice change for a day at least.

Ariana has been hanging on me lately, mostly because I think she saw the devastation of  my wife and I at the clinical trial failing. She’s been very protective of me lately as well. It breaks my heart but gladdens it at the same time, if that makes sense. Never in my life have I EVER loved something so much it truly hurt until she came into my life AND I realized what she was.  Took me a while but I finally got it. And now fate seems hell-bent on taking me away from her.

One of her favorite words to misuse is the word “fair.”  If we tell her she can’t have desert because she’s not in the “clean plate club” tonight (hasn’t finished her dinner), she exclaims loudly that it isn’t fair. Usually with faked (and sometimes real) tears and a tantrum for really rough nights when she’s already hit the wall 30 minutes ago and now we’re coasting on fumes just to get through dinner.

But this … this isn’t fucking fair.  And I know it’s ridiculous in some ways to say that. I know that others have it worse.  Blah blah blahbitty blah blah. It isn’t fucking fair, and piss off if you want to ridicule the statement. I don’t care about the other 7 billion right now, just my daughter and I. And if there were a crueler thing than to spend every day wondering if this is the day you break her heart, if this is the day she starts saying “I miss daddy,” if today’s the day I just become a memory of a father, etc., then I don’t know what it is.

I’m just feeding it now, circling the drain at my office desk and I need to stop and get some work done before I totally break down. Anyhow, I’ll post up as soon as I get some results, if not sooner.  Keep an eye on the Twitter feed for random thoughts in the meantime if you care to.

Cancerversaries and other oddities.

Home but can’t sleep again. Been in the hospital all week after not being able to stay awake, ironically. A Xanax and a Temazapam or some other chemical foolishness and here I am, downstairs on the keyboard.

This night, ideally, is one made for a joint burning low, feet buried in the sand of a midnight beach somewhere as the roach burns down and you feel the drug begin to pull at your soul and start the magic, listening to invisible waves crashing and the whisper of the water pulling back into the unknown.

Funny thing is I always wrote better hopped up on this chemical pharmaceutical garbage than the organic stuff. Listening to the 60’s on 6 channel and wishing I was in another time and place, that I could trade all this for a little shackish sort of thing on a beach somewhere 50 or 60 years ago with a surfboard, a little radio you had to smack a few times to get some real music instead of this modern fucking garbage, the musical pollution we suffer today.  Some good weed and all of these crosses on my back gone and just … waves, man.  Waves forever. Serenity, something I can’t fathom anymore. This battle’s been too hard, the meaning’s lost.

Can you see it, even if just for a second?  Smell the cloying scent of the grass, the taste lingering on your tongue as some Manfred Mann plays in the background, the smell of someone cooking down the boardwalk? Are you there with me, silently, the briny smell off the sand wafting by? No more cancer. No more anything. Just peace.

If wishes were fishes, I think the saying goes?

As of last week I’ve been fighting this battle for five years.  Five fucking years, man (that sounds cooler, btw, if you do it in Jeremy Pivin’s voice from Grosse Point Blank). I’m scarred, a shadow of my former self in so many ways besides simply the physical … 185 pounds or something ridiculous this week at PSL. What did I weight a few years ago, an obese-ish 250? There goes that problem at least, sucked into 2017 along with 5 or so shattered vertebrae, 6″ of my colon and who remembers what else.

The clinical trial, my CAR-T salvation, was a failure.  Did I post that here?  I think I’m still in shock about that. My numbers went up.  All that “fun” and money and time for nothing. I even had a woman visit while out there who had just gone through it, same flavor of Myeloma as me, 100% gone. Me?  Numbers go up. I don’t know if it was my cancer, or they fucked the t-cells up, or having floaters and travel nurses watching me and screwing up, who knows. Not much point in trying to find blame. It’s over, it failed. Just like the rest of the treatments.

Oh man. Four Tops doing “I Can’t Help Myself.” Swoon. Just something about good music in the darkness.

I have to get up at some ungodly hour tomorrow morning to meet my oncologist to sign off on the next treatment.  Carfilzomib, here we come. Guess this better work since I think we’ve been through about everything else except another transplant.

Blech, Beatles and I’m outta skips for an hour.  Damnit.

I was talking to a psychiatrist this morning, real strong German accent. Gorgeous. Amy asked if she blew me, and it being the third time I’d fielded that question today from her about someone female I just gave up and said sure hon, if it makes you feel better. If wishes were fishes indeed. Anyways, we talked, I cried as usual. She had some cool things to say and was willing to work with Amy and I, and Ariana as well. She apparently  has a background in pediatrics as well. She talked to me about finding the MEANING in this battle, in this consummation of who I was, really. I’ll have to ponder that.

Wish I could ponder it with a joint burning. Reference above.

And to Liz, thanks for the care and the spirit. It may be a day job but I enjoyed our talks and from a scary hospital bed a friend, much less one who’s seen as much as I think you have, is rare indeed. My humble thanks.

I feel like this is oversharing tonight, too much honestly. I just padded down here and the page beckoned.  It does that sometimes, pulls me in, sucks me in, makes me visualize Ariana reading this stuff someday printed in some archaic PDF I’ve left instructions to be made. Wonder if she’ll be able to reach across the years and see me here tonight in the darkness while she slept obliviously above me, know how hard, how fucking hard, her daddy fought for another day with her. See herself on that beach with me, maybe, not a care in the world, just a dad and daughter burning one to the sunset Gods and the never-ending waves in the darkness.

Jesus … and we end with the Sound of Silence, one of my all-time favs. Don’t tell me that’s not motherfucking kismet, man. My writing career, my life in a way. Words that resonate, each one, haunting, beautiful.

Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence
In restless dreams I walked alone
Narrow streets of cobblestone
‘Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence
And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence
Fools, said I, you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you
But my words, like silent raindrops fell
And echoed in the wells of silence
And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said, the words of the prophets are written on the subway walls
And tenement halls
And whispered in the sounds of silence

 

Goodnight.

Strange.

I’m still waiting to hear from Dr. Berdeja and the folks at Sarah Cannon about my initial results. It’s tiring, emotionally. Further, since the procedure I’ve had some serious new pain in my shoulders, hips and calves that the painkillers I have aren’t making a dent in and is proving to be poor company to the scanxiety scratching and snarling at the door.

I talked to Megan the Wonder-PA about this and she suggested, after we tested various motions, that it was muscular. Which is possible, although I have been walking a ton lately (for me) with the family and by now I would have expected the muscles to start responding.  It’s probably time to make good on my promise to “someday” try yoga.

Our dog, Trixie, has the right idea on our walks. You’ll be walking and suddenly stopped involuntarily to look back and see she’s laying in the grass in the shade. Just like me for 47+ years I’m pretty sure she’s thinking the same thing I am: “fuck this shit.”

But, it’s important, and I’ve never done stuff like this. Plus it’s family time, something new to do after dinner besides just flipping on the brainrot box.

There’s something off with my eyesight too … I read every night with my trusty Kindle PaperWhite and for the last several months at a certain distance I get double-vision unless I close one eye. Either one. Bizarre.

If you don’t mind a quick digression, I figured out a new item on my bucket list. If this clinical trial really is successful like it has been for some (complete remissions), I want this port removed from my chest. It doesn’t bother me in a pain sense or anything, but every time I touch it it freaks me out and reminds me that I have cancer. I’m already GMO, which is troubling when you really stop and think about it; let’s take the spigot out of my chest though, k?

I *think* I have things balanced with the family again, but then again I’ve thought that so many times in my life I’ve lost count. The whole thing is hurtful, and shameful, and about 1,001 other descriptive terms that almost but never quite capture it all. For example their constant bashing of my wife and doing things I’ve told them are putting my marriage at risk (sending her shitty emails, texts, badmouthing her, etc.) while I’m trying desperately to fix it. And then they push me to get divorced.

I mean there’s a genius idea. So the terminal cancer patient is supposed to get rid of the only person he even has a remote chance of romantic love with thanks to this disease (and I do try to be hopeful about that because that’s what Dex took from us), someone who cared enough to be my caregiver for the last five years through the horrors the Dex put us through even while she HATED me, truly hated me.  So get rid of any hope of intimacy now that I finally am starting to understand relationships, myself and how to treat people with kindness and love, and my caregiver.  Hell I can’t even get my socks on in the morning most days due to the pain without her help.

Oh and as an added bonus, I can lose half of whatever time I have left with my daughter, the ONLY thing that matters to me on this planet and the only reason I’m still here. I would lose my house, my baby’s house. Where she learned to ride a bike, and we laughed and cried together and she walked to school everyday with her mother.

But no, it’s their way or the highway. I seriously should have been a police negotiator or similar. Somehow I end up in the middle of everyone elses’ problems which I then have to clean up OR ELSE. Fucking family businesses.

Yes, I can leave. However I’d be giving up a salary large enough to allow my wife not to work and raise our daughter while she studies to become a nurse (she just got into a very prestigious nursing program here), true “Cadillac” insurance which when you are running up a million a year or so is somewhat important, including for your daughter (Ari was born with a cleft lip and palate).  And instead of spending whatever time I have left just trying to build some memories with my daughter and see if I can fix this broken disaster of a marriage (and my family too, because I thought it would be nice to see if I could break through 47 years of bullshit and make a real attempt at having one), I’d spend it trying to find a job that is going to be OK with me taking off for five weeks at a time to do stuff like this clinical trial I just did?  Or to doctor’s appointments every week? Not happening.

Here I eat shit, but at least I don’t have to worry about the serious stuff. I wish I felt like I had another option but the stress of cancer is enough  — I’ve been at my limit for so long I barely remember what it feels like to not take an anti-anxiety drug and to just feel relaxed.  The way I felt scuba diving, basically. Stress-free, just floating, no phones or email or toxic people incapable of empathy. I think that’s why I like being a night-owl so much. I can pop my medicine, grab a glass of frozen fruit (my nighttime snack) and my Kindle, and just lay down (the only position that doesn’t hurt) and read, clear my mind of all the crap. Unfortunately there’s always another day coming and lately, thanks to the clinical trial, all the travel, the family drama, etc., they’ve been tough.  I’m still here fighting, but they’ve been tough.

But it’s cleared up for another day, at least.  The family drama, that is.  Congratulations, Rich, here’s another bottle of Xanax.