Got a lil’ annoyed yesterday working with this and decided today to move it all to WordPress. The new blog can be found at richvsmm.blog. All posts and comments have already been moved, enjoy the new site!
Going to keep this relatively short, which for me is just a small novella instead of the first seven letter volumes of an Encyclopedia. Do they still have those btw, or has Wikipedia destroyed that?
Been thinking about this blog quite a bit, specifically that I think I can handle writing here again without the emotional side-effects being quite as severe. As someone who spent a good portion of their adult life writing and blogging (not here), I found that sharing everything in almost a stream of consciousness sort of “core dump” made for good reading and valuable introspection but at the cost of opening a Pandora’s Box I couldn’t control emotionally. When I was just writing about dating, poker and other silliness that was one thing, but the issues revolving around cancer, and what’s more having a terminal diagnosis as the parent of a young child, became something well beyond what even good anti-depressants and anti-anxiety drugs could cope with. And at the end of the day I still have to function, something I found almost impossible when I forced myself to think too much about things (I’ll write about that concept some day, come to think of it).
I need a way to keep in touch with folks because I simply can’t do it now even with the relatively small circle of close friends and family I keep in the loop. the energy simply isn’t there, as ridiculous as that probably sounds to folks who’ve never experienced what the side-effect word “fatigue” mean thanks to a disease. Facebook is nice for that, but limiting in ways I just don’t enjoy — so like, while I do believe you have the right (within reason) to put whatever you want on your own FB page, sometimes I feel what I write on there regarding this particular nightmare is a fucking bummer that’s both too personal and, paradoxically, not personal enough. So I decided on two things — uno, I’d go back and post here any cancer-related FB posts for continuity (most from 2016, although I’ll have to go back and see what else I skipped when I have some time), and two, I’d just post executive summaries or TL:DR versions on FB with a link to here. That way people have a choice of how deep down the rabbit hole they want to go with me.
This is like an epiphany I’ve had recently. It’s probably in some social media how-to book from a billion years ago written by a monk who had taken on a lifetime vow of silence and lived in a cavern towering over whatever the hell that area he was in was called back when there was just one continent, Pangaea, which may honestly be complete bullshit because when I think about it the only way I know that is from video games that really probably shouldn’t be taken as gospel as for being a reliable way of learning the history of your own planet but yeah so anyways this monk who noted that using this exact same method, presuming that someday someone developed the concepts of digital, well, anything, or electricity for that matter, much less global communications systems, the internet, and indeed not only social media but also specifically Facebook and Twitter, would be really nifty. And here I am thinking I’m a fucking genius.
* The preceding paragraph may have been brought to you by the letters M, M and J.
Further, if I’m being honest, I’m also not being good about my book — which is a problem since the chemo-brain has really been terrible lately and I’m forgetting more than I’m remembering some days. I had a few friends over for the UFC 207 PPV last weekend and my ability to recollect fighters names is just gone to the point where it was really embarrassing. I know people get it but as someone who’s never had looks or a trust fund, intelligence was one of my few good marketing points (kidding) that allowed me to feel at least somewhat good about myself (not kidding) and now that seems to be going too. More than a little concerned about this, but nothing I can do about it. Anyways point being I’m always randomly coming up with things I want to touch on but don’t write them down, which means those thoughts are just gone now thanks to this awesome ability to 100% forget them a few moments later. As I solidify the structure of how I want to present things in the book so the flow makes sense that’s just not OK anymore.
Going to go backwards in time from this morning (BTW linear time is nothing more than a tool for me, so sorry if I jump around a lot) so a few things make sense. Around Thanksgiving I had another attack of diverticulitis, something I have suffered from for over a decade. Usually attacking between 0-2 times a year, I get this pain in the same exact spot in my left lower stomach quadrant every time, go to this amazing GI guy (same guy who figured out I had cancer) at Rose who orders tests and a scan or colonoscopy if it’s been too long and then prescribes some antibiotics to get rid of it. Problem is I’m on attack #4 by around Thanksgiving for 2016, so when I call to find out what he wants me to do he calls me back from vacation to tell me it’s time to go the surgical route and gives me the number of a well-respected surgeon here. No date yet, although it’s looking like mid-January — the surgeon wants to get in touch with both the GI doc and my oncologist at CBCI to make sure he adjusts the surgical plan to be safe given my disease.
As part of that plan I had a hastily-scheduled meeting with my oncologist Dr. M. today (who is also in charge of the Colorado part of the clinical trial I have been in). Given my numbers just going sideways and the need for me to be off chemotherapy for months due to the surgery he has taken me out of the clinical trial for good. I think it’s too soon for me to have any perspective on that decision, but when my wife texted me asking how I felt about it my first reaction was disappointment. In no specific order,
- The numbers will start going up again. The only way to spin that positive is that my oncologist wants me to get into a clinical trial for Darzalex (daratumumab) that is apparently hard to get into, and one of the requirements is the #’s have gone up from a previous treatment. That sounds clinical but in real-speak that’s “you’ll be off chemo for two months with cancer rampaging through your system and the associated risks. Like death.”
- Even if I don’t get into that trial, he wants to start a Darzalex-based treatment. This is a newer drug, approved in 2014 or ’15 stand-alone and just two months ago for use in the more common cocktail approach taken with multiple myeloma. This is one of the new monoclonal antibody treatments that have been in the news so much.
- My contact will switch from the research nurse, who I loved, back to the oncologist’s coordinator, who I also loved but I’ll miss the research nurse. Sarah rocks socks and she’ll be missed, although she promised to come by and say hi when I’m in clinic.
- Yet another failed treatment. It’s impossible to gather up hope when I’m on what, #6 now and well into the experimental and newest stuff? Normally I like new things. Like TV’s. Or food. New things like chemotherapy where nobody knows what the long-term effects are (or sometimes the short-term) are a lil’ scary. So is mixing them with experimental stuff in a clinical trial to see what happens.
- At least I’ll be off Dex for a few months. The clinical trial had me on the max dose and I was NOT enjoying it or any of the side-effects. Nor were the people around me, although I feel like I roid-raged a lot less this time than when I was on this dosage level back during chemotherapy #1 (CyBorD).
- In fact, this will mean not taking 94 pills a month, an end to the monthly 24-hour urine collections, the EKG’s, etc. for at least a few months. That doesn’t suck. Actually I didn’t mind any of it except the pills and the urine collection, although I’m still on over 100 pills a month even without the chemo. Which reminds me that I fucking forgot to ask which of the prophylactic meds I was taking due to this chemo I can get the hell off of now, grr.
- Darzalex is IV-based. On one hand that’s fine since I don’t really care and have the port now (plus two other IV’s I do anyways for all of this), but on the other due to CBCI being 30 minutes from my house and my office that means more missed work.
I don’t know if it’s mental/emotional fatigue from all the intensive medical stuff from the last four years or just how I’m wired differently, but when a surgeon tells me “about a week or more recovery in the hospital,” what pops into my head right after “Can I see my daughter during that time” is “Is your wifi any good?”
Waiting to hear back on test results and analysis (and wifi answer!), chats between surgeons and doctors and oncologists, etc. File that one under “Joygasm.” Or “Gyro,” since I ordered one for lunch as part of my “food for the soul” regimen I tend to self-prescribe to after hearing troubling news.
No, nobody understands my filing system.
I gave Ariana a pad to draw on months ago from my desk, not even really thinking about which one it was. Found this and 100 more drawings this weekend on the pad’s pages while digging through her craft stuff and it just broke me. There’s some annoying English class word for this … allegory? Yeah, allegory. This is a perfect allegory for a day, any day, in my life, my personal version of the six-word story that I, ironically, didn’t even write.
For those interested, this is the clinical trial drug I am taking (ACY-241) and the news from ASH this weekend about it. Celgene, who makes Pomalyst (and Revlimid, another big hitter in Multiple Myeloma) just announced in the last few days that they were buying this company. It’s bizarre to actually read about a clinical trial you are in. Probably be more bizarre if the announcement was that 90% of the participants had spontaneously combusted or something.
Acetylon Presents Early Phase 1a1b Results for Citarinostat
Yeah pretty much. It’s surprising how much of this stuff is misunderstood.
Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.
Ironically the worst night of sleep I’ve had in years was last night — feel like midgets spent the evening slapping me in the forehead every time I closed my eyes. That should make for some entertaining results with this sleep study. Going to end up the poster child for something at this point.
Getting a port put in today. I fought this for what, 3 years? Sick of getting poked and nurses not being able to find my veins easily anymore, but I had fought this until recently. I think something changed when I was in the hospital last month with pneumonia. I just feel defeated a bit, broken down. Tired of mentally fighting to pretend things could go back to normal, that this was all just a phase. Something about staring at those ceiling tiles, again and again, just broke down my resistance, until the thought of just not being stuck (or missed, as the case more often is) constantly got to be too much.
Oh well — on the bright side, I foresee a LOT of natural painkilling methods tonight followed by a sick UFC card on Saturday, so screw it, bring on the cyborg Rich.