Dara, death and Dexamethasone.

I have three disparate things to deal with today, so let’s get to it.

At my appointment last Friday, on top of getting an IViG infusion that I didn’t enjoy (legs would NOT stop tingling and it was driving me batshit crazy) I talked to my oncology team.  The net-net is I don’t want to take Dexamethasone any more if possible (I get into that deeper in this entry) and as soon as insurance approves it we’ll be starting up with Daratumumab and not waiting for a clinical trial.  The oncologists are with me on the Dex thing as I’m apparently not doing well on it (again, will talk about that shortly) but there’s not much we can do to a certain extent.  At least they now know what’s going on.

Secondly, I found out via Facebook on Sunday that a friend, Jim, died that morning of a heart attack.  I met Jim on a diving trip before I was diagnosed, and once or twice a year since we’d get together when he’d come down to the horse park in Parker (he ran a tack shop up north).  I always felt a certain amount of pride that he usually used a pic I snapped of him diving in Cozumel as his Facebook profile picture.  I had just been emailing with him the other week too about my recent surgery (he suffered from diverticulitis as well) and getting together this summer.

Jim was a lot of things, but most of all he was one of those folks you just mesh with where it doesn’t matter how long it’s been since you’ve gotten together — it would always feel like it hadn’t been that long, something we frequently remarked upon.  I appreciated that for it’s rarity and the fun chats we had, and was jealous that we didn’t get to dive together more (or take that deep-sea fishing trip we talked about).  And I loved that, like me (and I think inspired by me putting a bouncy house in my living room one day), he had put a hammock swing in his living room for his beloved granddaughter.

He loved his grandkids and was about to have a third.  From the last email he sent me in late January,

What’s really funny is how my dreams have changed.  Instead of the usual which causes me to wake up feeling like a 17 year old, or business stuff, last night was about negotiating with my daughter about rotating the kids on a weekly basis.  Since she’s expecting another girl in May, and considering the size of her house with only 3 bedrooms, instead of doubling up a couple, this made sense…or simply let Cooper come live with us.

I dunno.  I’m never sure about what to say about someone who’s passed.  I wish we had more time, and Ariana had had a chance to meet Clara and his other grandchildren.  I wish I hadn’t been sick those times I wanted to take Ari to the horse park.  I wish, I wish, I wish.

When I’ve thought of Jim these past few days I have recurring thoughts of how Hunter S. Thompson wrote about his friend Oscar Zeta Acosta.  This is sort of how I saw Jim, in a way, this larger than life person that you better take seriously because he probably wasn’t kidding when he said he’d drill a hole through the wall of his shop to the dispensary next door if I ever needed it (true story).  So perhaps I’ll just put this here, a paragraph from Hunter’s epitaph for his friend, and leave it at that.  I’ll miss you something fierce, Jim, and I hope you were right about what you told me you were hoping for on the other side — although I don’t share the belief I never forgot you telling me about it or uncrossed my fingers that you were right.

Stand back. He is gone now, but even his memory stirs up winds that will blow heavy cars off the road. He was a monster, a true child of the century – faster than Bo Jackson and crazier than Neal Cassady…When the Brown Buffalo disappeared, we all lost one of those high notes that we will never hear again. Oscar was one of God’s own prototypes-a high-powered mutant of some kind who was never even considered for mass production. He was too weird to live and too rare to die.

Moving on, wistfully, although I try to avoid overwhelming myself with too much myeloma stuff (I mean I have the cancer, I don’t need to spend all of my free time reading more about it), when I do read about it one theme continually comes up — how awful Dexamethasone is. Given my recent chemo holiday thanks to (1) my colon resection surgery in mid-January and (2) the clinical trial results crapping out in terms of effective treatment, I’ve had some time to really think about this drug and chemo in general.

I mean hell, I haven’t been Dex-free, with the exception of the couple of months during and around my stem cell transplant, for what, four years now?

So I’ll get to why I’ve been thinking about Dex in a bit, but for background Dex is a glucocorticosteroid, which is a 27-point word in Scrabble.  I haven’t the slightest idea what in God’s name a glucocorticosteriod is, but I’ve learned by now if I look that up I won’t understand what it says anyways.  So just practice saying “glucocorticosteroid” and then at least you’ll sound like you know what you’re talking about.  Make a serious face when you say it too.  Maybe borrow some glasses and a clipboard to add to the effect.

What I do know is that it’s used in almost every multiple myeloma cocktail (multiple drug treatment) there is.  Not only can it apparently kill myeloma cells, but it also increases the efficacy of at least some drugs it’s commonly mixed with.

It also sucks.  Like seriously sucks.  In fact I’m incapable of explaining, I think, how much it sucks.

Before I even get into that, however, another quick digression — Rich, why are you writing about this today, or really, why are you even writing this blog?  I’ll admit, it has been dark enough lately that I’ve wondered that myself.  So here’s the thing … (1) it’s cathartic to me as a lifelong writer and blogger, (2) it’s a good way to keep folks updated on what’s going on with this disease and I, and lastly (3) I’m hoping it might provide some real information to folks with Google and myeloma.  Because man when I got diagnosed I think the first thing I saw Googling it was “yeah my aunt had that, got diagnosed and was dead a month later.”

So I’m blunt but I’m being honest, both about this cancer and what I’m going through with it.  Cancer patients think about things like suicide, just giving up on the chemotherapies, feeling helpless, etc.  That’s real.  Yes it’s also real that some folks get cancer and become marathon runners and climb 14’ers, but I really think that’s more the exception rather than the rule.  It’s stuff like that that has me avoid places like the Myeloma Beacon like the plague — I just can’t deal with people whitewashing their own illness for various reasons.

Folks, cancer sucks syphilitic monkey nuts.  Don’t fool yourself.  It’s not fun.  It doesn’t add to life.  It takes everything you were and throws it away no matter how hard your try to hold on to it while pulling back the curtain, for most of us anyways, on a world so horrific that we generally don’t talk about it for a reason.

Further, feeling like that and then seeing blog post after news article after tweet after Facebook viral share about those people who “rise above” or whatever they call it and do all of that stuff most of us couldn’t do before we had cancer just seems to make people with cancer feel like lazy, bad attitude malcontents because we’re not immediately raising cancer awareness by biking a billion miles or talking about how having a cancer diagnosis has somehow magically made us the greatest and most active person on Earth.

To me, that fucking sucks.  I don’t begrudge those people their lives but when it’s the ONLY cancer stories you ever hear or see covered it gets old, and honestly it hurts a bit.  “Oh man, I have cancer and … Jesus, am I supposed to be feeling and doing that?  Wow I suck.”  It doesn’t help that there are a lot of folks out there who think you are supposed to be that too, and will treat you differently if you aren’t.  “You just need to have a good attitude …” No, I need your capricious deity you keep talking about me needing to not have given me something terminal that’s rarer than winning the lottery.  Thanks though!

So this blog is not so much a reaction to those people and their unrealistic lifestyles, but for people like me with the same fears, depression and anxieties that I and others I’ve talked to with this goddamn death sentence have.  I know at least for myself that’s the only way I’ve shored up my own emotional and mental defenses at times — just knowing someone else out there thinks this sucks too.  So yeah,  I’ll say it.  I’ll admit to it.  I’ll go into why it sucks in gory detail.  I might even use big words, and f-bombs.  And if you’ve felt it, then you know you’re not alone.  And if you haven’t, then hey, I’m happy to be the poster boy for “man, at least I’m not as bad off as this clown.”  Go run up a 14’er and piss off, these words aren’t for you.

On that note if you’re here because you were just recently diagnosed with multiple myeloma and you Googled some of these drugs, well, you won’t leave this blog entry feeling better, I promise you that.  Then again you have incurable cancer, you poor fucking bastard, so you might as well learn what the doctor ISN’T telling you. And PS, if you need to talk to me directly that option is always available to folks — just use the contact bit here on the blog with your email address and what’s up.

Back to it.  So part of the problem is, as I’ve written before, doctors (for obvious reasons) don’t so much lie as sort of gloss over things.  Which isn’t a bad thing, don’t get me wrong — I don’t need to have my doctor say “well we looked at the weekly results and on a scale of 1 to Fucksville, buy a one-way ticket.”  I just get tired of the whitewashing of things.  “You may experience a bit of fatigue …”  Really?  I’d call needing a triple venti no foam latte 1-2 times a day to fight off narcolepsy as a tad more than “fatigue,” but hey that’s me.  Mood swings?  Yeah, for four years that changed who I was and threw my marriage down the toilet.  Weight gain?  So bad it helped fuel a depression I’ve had to get professional help and therapeutic prescription drugs to deal with.  Disastrous effects on my sleep.  Etc., etc.  In fact there isn’t a lot I HAVEN’T experienced off the list of side effects, when I read them.

Of them all (that I’ve taken, which has become quite the laundry list at this point) the Dex is by far the worst.  Not only does the drug have horrific side effects but I managed to experience almost all of them to the point that the drug really has fundamentally rewired me.  Combined with the other things I was going through this drug put my relationship with my daughter in jeopardy, has my wife and I struggling to maintain even a remotely amicable relationship, and a few weeks ago damn near almost killed me.

I won’t go into the details of that night, but I will say it was the second time in my life (both after my cancer diagnosis) that I’ve had to research suicide prevention for myself.  And said an atheistic prayer that I don’t have a shotgun in the house and got rid of the ammo for the hunting rifles.  On the bright side I learned that children of suicides are more likely to go out that way themselves, and women are three times more likely to attempt suicide (although men are more successful at actually doing it, according to the social work at my oncologist’s office).

Things you learn when the only reason you haven’t done yourself in, and hopefully never will, is your daughter.  Follow a few links off of Googling “daughter of suicide” to put a brake on that plan, trust me.

Being on a chemo holiday for almost two months now has shown me (and those around me) who I really am, and presumably used to be at least in general.  Playful.  Engaging.  Helpful.  In a good mood.  A good listener, and friend.  Funny (if you like my sense of humor).  A hard worker.  A better father, and a better husband.  Etc.  Not to say I was some saint before all of this happened, but I sure as hell wasn’t the 9th degree black belt  asshole Dex made me into.

So I let the oncologists know all of this that has been going on with me on Friday, which scared them a bit I think.  One, Megan, related to me a horror story about a patient who came to her late one afternoon years ago because as a gun collector, he didn’t feel safe being at home anymore with all of the guns.  My doctor was rubbing my leg in sympathetic sadness as I was relating this because I was not doing well talking about it — it’s scary though, man.  We’re talking now about how I’ll be remembered, how I treat people, the never-ending scramble to hold on to what little of my former life and my relationship with my daughter I can find the fragments of.  Who Dex makes me is not the epitaph I want.

And what kind of a shitty choice is it to have to choose between who you are and trying to beat this fucking disease?

So yeah, that’s Dex.  I wish I had some great answer here for people as to how to deal with this but I just don’t.  It’s in almost every therapy we do, there aren’t enough studies done for doctors to comfortably cut the dosage or replace it with something else (although some do) usually, so we just have to deal with it.

The only bright side is apparently they used to dose even more of this horrible shit than they do now.  That’s terrifying to me.

Author: uwfacepalm

Father, husband, portfolio manager, cancer victim (multiple myeloma since 2013). Trying to navigate this goddamn disease as best I can while enjoying what time I have left via those relationships, friends, the UFC, gaming, MMJ, diving and helping teach it before this all went down as a PADI Assistant Instructor and a Dive Guide at the Denver Aquarium (well, before my white blood cell count went to shit thanks to the chemo/disease).

3 thoughts on “Dara, death and Dexamethasone.”

  1. Hi, I haven’t yet looked at your full story, or other blogs, but I just wanted to say that I’m pleased I read this one! I didn’t finish it feeling worse than before I started it and I’ve got a different attitude to you about the disease (im lucky to have both multiple myeloma and cardiac Amyloidosis). Nevertheless, it’s great to hear people say that cancer is shit and it fucks up your life, badly, and then it kills you. Whilst all this is happening, at least for me, I find it more tolerable to be positive and upbeat on every possible occasion (I have a theory that the drugs work best if you’re totally positive about the intended outcomes). I do still try to do the stuff I did before, despite now being rubbish at all of it, but it helps me remember who I was, and really still am, before getting ill. The illness just isn’t me, it’s trying to change me and, where possible, i fight against that. Finally, for now, I agree with you about Dex. My experiences were nowhere near as awful as yours but, for 3 days a week I was one person and then for 4 days a weeek someone else!! That can’t be right and am pretty sure I won’t ever go back into it, despite it feeling a little bit like the ‘speed’ I ocaasionly took in my ‘bad lad’ youth. Cuddle your daughter and smile a lot………
    Cheers
    Ross

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    1. Hi Ross, thanks for sharing your story … that’s crazy to have both of those, I’ll have to read up on cardiac AML. I do agree with you about the drugs, actually, and coming into them with a good attitude, as well as trying to do the old stuff to help remember. I try to do the same, although unfortunately my big thing before diagnosis was diving and getting under ocean water with a depressed white blood cell count is not conduscive to staying healthy =( I keep paying my PADI Pro dues every year though just in case though — similar to the mental/emotional battle of getting a port I’m just not ready to release that part of who I was yet.

      It’s crazy how much Dex changes you, isn’t it? Hopefully you don’t need to go back on it, and cheers to you as well!

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      1. H Dara, another similarity; I keep paying my cycling club dues year on year just in case I suddenly feel well enough to race at 30 mph with a bunch of 25 year olds…..let’s jointly celebrate when you get back under the ocean and I get back on the start line, can’t be too far away can it??
        Cheers
        Ross

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