VTD-PACE, another SCT … must be Christmas.

I, um, yeah.

Fuck.

Got a call that registered as my oncologist yesterday, so I was emotionally unprepared when instead of a scheduler confirming something it was my entire oncology team. I apparently came up at the office’s weekly meeting.

Have some bullet points.

  • This Friday we’re stopping the Daratumumab. It’s not working on any of the numbers at this point except possibly slowing the advance of the Myeloma slightly. I’d share the numbers but for some fucking reason all of my labs show up on HealthOne’s patient portal except my Myeloma labs. USEFUL.
  • After review the team wants to proceed with VTD-PACE. I went into detail on what I know about that treatment in this entry, but I meet with one of the team on Friday to learn more and schedule it. Ninety-six hour infusion of Dexamethasone + Thalidomide + Cisplatin + Doxorubicin + Cyclophosphamide + Etoposide + Bortezomib. The first one will be in-patient, the next ones outpatient depending on the outcome and complications of the first treatment.
  • I was told that with few patient exceptions PACE works as the “fire putter-outer,” which I need now.
  • After a 50% or more reduction in my M-Spike and IgG, which they expect to happen within 2-3 treatments, they want me to do a stem cell transplant (my 2nd) six weeks later (time to recover).  This would be August-ish.
  • Once that’s done, most likely a CAR-T clinical trial. They are starting one up in September at my oncology office, but if that’s full they will refer me out.

This has broken me for the last 24 hours. Normally, or whatever the Hell that even means anymore after four years of chemotherapies and an SCT in another state, I can mentally compartmentalize bad news and just examine it in small, controllable chunks. Things like this, however, make my emotional wall about as effective as one made of sand in the face of a hurricane. I flip from this surreal sort of disbelief that this is happening, and happening so soon, to outright breaking down.

It’s hard to describe what it’s like to not be able to look at your own daughter without losing it. I have zero control right now.  I just … I can’t.  Not today, sorry.

Was sitting here thinking about how to express how I’ve felt since yesterday. With the exception of last night, when I bleached my brain out with a combination of the darkest, grittiest metal I have cranked so loud it hurt and a ridiculous amount of Crazy Train, I can’t even type the words. It’s too painful.

This is about as close as I can approximate:

Shame that show never lived up to its pilot.

As a cancer victim I’ve often marveled, usually in a disappointed sort of way, about the way my perception of life has changed after four years of this disaster. One example is how on that call yesterday I was told to probably expect more transfusions. Ever since the first one I’ve always felt guilty about being transfused, like there was someone more deserving or needy of that blood than me. I feel the same about staying in a busy hospital, like there’s always someone more deserving or needing that room and I need to apologize for taking up space and time.

The dark epiphany is realizing that no, those things exist for people like me. There’s a snap to reality there about how really sick you are that can be pretty brutal, this sudden and painful paradigm shift between looking at the worst-case scenario world you thought you understood and the universe making sure you know full-well that you are in fact in the epicenter of this nightmare.

I don’t know if that’s explainable in a real sense to people who haven’t experienced it. Let me put it this way: you know you have a terminal disease. But there are days when you KNOW you have a terminal disease.

Different levels of comprehension and reality sinking in.

Probably not going to be writing again until next week from the hospital (I promise I’ll include pics). I’ve penned a lot in the last few days, publicly and privately, and I just need Pandora’s Box closed again for now and to get off this pedestal and fade into the shadows to recharge so I can function.

On another note, as a relatively new user on Twitter I discovered two things this week:

  • You can “mute” people that your friends RT so you no longer see the RT’s. Way too much political stuff lately for someone who sits in front of several news feeds all day. I just want to hear and share cancer-related stuff so that was pretty cool — I can keep reading people’s Tweets but cull out with a lil’ work most of the non-cancer stuff I keep having to scroll past. I say this like it’s some new thing but I’m sure everyone but me knew it. I can say, however, that after a good hour of work today I have scrubbed my feed clean and it’s like a whole new experience.
  • When your feed is 99% cancer-related news and you’ve been following 5-10 new people a day from all sorts of flavors of Doom, DO NOT READ YOURSELF AWAKE IN BED WITH IT.  I can handle most stuff but I have ZERO defense against child cancer stories, which were the first things I saw from yesterday. Sobbing yourself awake as you imagine what it must feel like to be told as a parent that the therapies are being stopped and to just enjoy your remaining time together is … I can’t even imagine. I do know I’d rather be the recipient of the soap in a sock code red beating from Full Metal Jacket than ever have that experience in bed again.

I can’t turn this entry positive. I give up.

Cya’s.

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).

5 thoughts on “VTD-PACE, another SCT … must be Christmas.”

  1. I wake up here in the UK and read your blog but I’m not going to do that anymore and I feel a bit mean given what I’m about to say but, in a weird way, I still feel entitled given that I too have terminal and incurable cancer. I also have some pretty unpleasant ongoing treatment and symptoms/side effects and will shortly be having a six month+ spell in hospital for an intensive clinical trial that might prolong my life a bit. So……I’m thinking that maybe this is like B.O. and even your best friends haven’t told you..I’m stopping reading your blog because it is unremittingly pessimistic and negative, even today you moaned because you can’t see a set of numbers online. Things are awful for you and you are likely to die early……OK that’s out of the way so how can you make things better?? I don’t think constantly writing about the shit will make you feel better (it certainly doesn’t make me feel better) about it because then it becomes ‘real’. Maybe writing down just one or two good things will make them ‘real’ too…..how great that coffee was, isn’t it fantastic when someone lets you out in traffic, that nurse looks amazing, that joke is fucking hilarious…..I’m willing to accept that I’m totally wrong here, all i see is what you write and I know nothing more about you than that, apart from our shared prognosis. I can’t spend time with negative people because I don’t have enough time left, I just feel the more I can fill my time thinking about things that make me smile, the better I will feel. It’s not easy and I cry at 04.00 more than I want to but most of the time I’m smiling.
    Maybe nobody has ever said this to you and I sincerely hope you don’t think of me as a total shit. I SO want you to feel better but know you can’t clinically, but maybe you can mentally. Good luck mate, I wish you all the best.
    Ross

    Liked by 1 person

    1. Hey Ross! I wanted to let you know up front that not only do I appreciate this comment, as well as all of your other ones, but that I’ll be thinking about you and hoping it goes well.

      Because of your post I think I might add a Surgeon General-esque warning to the blog. You actually came close to the truth here but not knowing me I certainly understand your opinion. I actually DO feel better writing about this stuff. I figured out a long time ago that I could exorcise a LOT of things just by writing what I’m feeling and then I could sort things out better. Obviously only seeing the negative stuff your comments make perfect sense.

      That being said I never promised puppies and sunshine because of it — I get a lot out of my writing and if someone else does, wonderful! If not I TOTALLY get it, so please don’t think you’re a “shit” by pointing out what you see. Take care and my sincerest wishes for better health, better times and some great smiles during it all my friend!

      -R

      Like

      1. Fuck me, you’re a top bloke!! So many people going through our type of shit would have told me to fuck off and I don’t understand etc. I’m so impressed with your strength, even if I only see your posts and the bad stuff alone. KEEP WRITING as I will keep reading!
        Thinking of you at the moment Rich, you deserve some of the good stuff. BTW, was watching a local UK ‘dark comedy’ series here called ‘Loaded’ and there was great exchange where a flash newly wealthy guy was trying to impress his old school teacher, mid way through the teacher said….”and by the way I’ve got cancer, not the good kind that makes your cock bigger and makes you smell like roses, the BAD kind, the cancery cancer…”. The first one is the kind we should have got mate, life is just unfair……Haha.

        Liked by 1 person

    1. Will do and love you too, Cathy. Not only do you provide more comfort than you know in my life but your constant encouragement and compliments, coming as they are from such an accomplished and talented writer and human being, mean a lot. Hugs!

      Like

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