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?


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.

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).

9 thoughts on “Screw “hope.””

  1. Rich, I have been there and hope does suck sometimes. I felt often in the past couple years that i might be better if I just “died already” and got it over with so my family, son and friends could go back to their lives. I am truly hoping this new regimine gives you some more time and that they figure out what is going on with your pain. I am happy we have been keeping in touch. Tell your wife and daughter I say hello.


    1. Yeah, I’ve had that thought a lot as well. The only thing that keeps me from taking a more active role in that happening is it’s not the role model I want to leave for my daughter. It’s just pain. It sucks, and days like this are fucking awful, but it’s not worth a lifetime of “my daddy didn’t love me enough not to kill himself” to me.

      I’m glad we’ve kept in touch too, and I’ll let them know you said hi.


    1. I go every Monday and Tuesday mid-morning … if you really want to go and sit there with me, which I truly appreciate but isn’t necessary, let me know what day works and I’ll let you know what time (it varies slightly each week). And thank you, that’s a truly sweet offer Kel.


  2. Damn Rich. You really know how to make us “normals” really start to question our own mortality. Especially being a relatively new father myself, and having a myriad of health issues myself, any one of which could make me be the missing father in their life. I always read your blog posts, and always admire your courage and determination, if for no other reason than your stated reason “live long enough for her to remember me”. Having lost a number of people close to me over the last year, and a recent close family friend being given literal weeks with a glioblastoma, it makes me realize that in our own selfishness, we forget to tell the people that have made an impact on our life how much we love them. Until it is too late. Well, it’s not to late. Love you man.


    1. Hey EA, thanks for the comments. Love you too brother. Yeah Glio’s are brutal, seen a few folks on Twitter with brain cancer talk about those and that’s considered “the bad brain cancer.” I don’t think it’s selfishness though, honestly — I just think we’re conditioned to not think about our mortality so we just assume, subconsciously, that there’s always going to be time. Being faced with stuff like you and I have makes you realize that’s just a pleasant fantasy and the reality is we, or someone we love, could go at any minute. I’d like to think, at least since I got off that goddamn steroid Dexamethasone a lil’ over a year ago, that I’ve made more of an effort to let people know they matter to me. It makes a difference, even if it’s just to me.


  3. There was a point in my myeloma journey where I thought I wouldn’t last much longer. It turns out I was wrong, which is what I hope happens for you with the Carfilzomib. But, in my experience, assuming the worst can pay off. I made some end-of-life decisions, tried to make sure I spent time on a few final projects, and worked to get those around me to accept what was happening.

    But with the uncertainty always lurking, it’s so hard to keep it together. My problem with that is anxiety rather than depression. Waiting on test results, does tend to make one build hope. I try to suppress that but it’s hard.



    1. I was just talking to a friend here with Myeloma about that, specifically how with Myeloma you’re either suffering from anxiety/scanxiety or depression. I wish there was a third option but the longer this shitty journey goes the worse, unfortunately, it gets. Secondary cancers, organ damage, more bone problems, more tumors. Those are some fairly large 600 lb gorillas in the room to be able to constantly ignore, as you well know.


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