The Random Mumblings of a Disgruntled Muscular Minarchist
Igitur qui desiderat pacem praeparet bellum
Friday, April 15, 2022
No Credible Counterargument
Sunday, February 13, 2022
That word... I do not think it means, what you think it means...
Friday, February 11, 2022
Ten years gone... But never, EVER, forgotten...
Wednesday, February 02, 2022
The Absurdity of My Continued State of Being Alive
In case you haven't noticed, I have a somewhat odd, absurd, and dark sense of humor... Given my background it would be amazing if I didn't.
Obviously, as a cancer warrior, I am among the more heavily medicated humans, not actually residing in a long term care facility.
I take something like ... I think it's 17 maybe, it's easy to lose track, and miss one or two?.. different medications on a daily basis, and a couple more on a weekly or monthly basis; between cancer and associated paraneoplastic syndrome, endocrine dysfunction (or total lack of function, since my thyroid was removed in 2012), nerve damage, autoimmune inflammatory issues and arthritis, and every other damn thing wrong with me.
Funny thing about cancer, and cancer treatment; especially endocrine cancer with paraneoplastic syndrome... you end up taking a lot of odd medications for odd reasons.
Paraneoplastic syndrome makes you have symptoms of diseases you don't have, because it causes your body to not make some hormones, and make too much of others. Endocrine cancer does that already even without the paraneoplastic syndrome.... So you end up with issues that seemingly have nothing to do with where your cancer is, or what kind of cancer it is... And the treatments for the cancer have odd side effects on top of that.
... Thing is... I actually do think it's funny. It's really quite absurd just how hard everything is trying to kill me, and that I'm alive at all.. And with my twisted sense of humor, I find it all utterly hilarious in its absurdity...
One thing I find particularly absurdly funny, is that I spent decades in competitive physical pursuits... weight lifting, football, wrestling, jiujitsu, etc... And never took "performance enhancing substances" more serious than ECA...
... Side Note: ECA is Ephedrine (or pseudoephedrine), Caffeine, and Aspirin. Three completely legal over the counter drugs which in combination can slightly improve oxygen uptake and aerobic performance; and improve energy, focus, and alertness... mostly it's like drinking several cups of strong coffee, and many people take that combination every day without even knowing or thinking about it...
... And yet now, as a middle aged nearly bedridden man, I take enough testosterone, and dextroamphetamine, to rival an 80's WWF wrestler. Sadly, not to "enhance performance", but just to not lose all my muscle tone and muscle mass, and to stay awake and be able to focus enough to be functional.
Another thing I find absurdly funny, is some of the actual drugs I take, and what they're usually prescribed for, vs. what I actually take them for.
Right now, I take EIGHT different drugs that have significant anti-depressant, anti-anxiety, or anti-psychotic effects; five of which are actually specifically considered antidepressants or antipsychotics...
Meaning those meds are often or primarily prescribed as first line or second line treatments for depression, bipolar disorder, anxiety, OCD, various psychoses, and even schizophrenia and schizoaffective disorder (oh, and three more meds... hormones... that aren't used specifically for those issues, but which also tend to help with them).
... And I don't suffer from any of those issues, and I'm not prescribed any of those meds for treatment of those issues...
So what am I prescribed them for?
Well, as it turns out, we don't really understand either neurological pain, or nausea... I'm tempted to say "at all" but I suppose we have some small understanding of them in some ways; just not very much.
Other than obvious issues like organ or other discrete specific systemic dysfunction, physical damage, dehydration, clear blood chemistry issues, or severe vitamin, mineral, or other nutritional deficiencies; we don't really know what causes either, and we don't really know how either work.
As such, we don't really know why many medications that may help some people to relieve either of those sets of symptoms, work on those sets of symptoms; or why some meds work for some people, and not for others; or why they work great for some and barely work for others; or they work in combination with other meds for some, but not for others.
Hell... some meds can work great for one persons neuropathic issues or nausea, and the next person can have a paradoxical effect and those meds make the problem worse. I've had that happen with several different meds over the past 15 years.
So, you end up cycling through various medications, and cycling up and down dosages, and cycling in and out of combinations of different meds; hoping that this one or that one will work for you, or this or that combination or dosage will work etc... etc...
It can be maddening... sometimes literally, because of the side effects.... but it's so absurd, I can't help but find it funny.
Three of those eight medications, I take to treat moderate to intermittently severe cancer and cancer treatment related nausea. For whatever reason, most nausea meds, are also antipsychotic meds, or from the reverse perspective many anti-psychotics are also effective for some or most people at reducing nausea. We have no idea why.
Two of them are to treat a combination of both ADHD, and severe fatigue, and sleep dysfunction. We don't know why or how one of those meds works either, except that it seems to temporarily suppress the brains fatigue response. Both also tend to reduce depression and anxiety in some people (and paradoxically increase them in some others).
The other three, are all for neuropathic pain and other nerve damage related symptoms... and again we don't know why, but a lot of antidepressant or antipsychotic drugs, are also effective for SOME people to SOME degree, in treating neuropathic pain and associated issues. For some folks they work completely, for others they barely work at all, or they work in combination but not singly, and we have almost no idea how or why.
Reading that, a lot of people will have the instinctive response "no, bad, wrong, the problem is all those medications, you should stop taking all of them and just do XYZ"... whatever they thing XYZ may be.
No.
I've been going through this for 15 years now... I've done all the experimenting and testing with my body and what goes into it, and where I'm at right now, if I remove or reduce any of my meds, it makes things worse. Sometimes MUCH worse. Sometimes INTOLERABLY worse.
I HAVE done the "stop everything and start over" thing, a couple times now; all under doctors supervision, because the docs were concerned about the number and dosage of my meds and their interactions as well. It resulted in me being completely non-functional, or almost killed me, each time.
It's not like my docs and I haven't thought of this, and tried, and tested it... and it's not like my doctors are trying to pump me full of medications I don't need. Every single one of my docs is trying to MINIMIZE the medications and dosages I take... and this is the minimum right now.
... In fact, it's below minimum on a couple of them, because one of my docs is TERRIFIED of how screwed up my system is, and how high my dosages have to be just to work (I literally take what should be a lethal overdose of a couple of my meds, and they just barely work at those dosage levels) and is erring on the side of caution as we slowly and incrementally bump the dosages up every few months, as she sees the lower dosages aren't doing enough...
Oh, and before someone chimes in with "just smoke weed"/"just use thc/cbd edibles"/"just take cbd"... I've tried. Not only do they not help even with my nausea, they actually make the nausea worse. They work great for some people... I'm not one of those people.
Once the cancer is knocked down a lot, then I will be able to drop dosages on some meds, and likely drop some entirely. It's what happened each of the last four times.
What you've got to understand, is that cancer... particularly endocrine cancer... is a systemic disease. It causes every part of your body to malfunction and every system to dysfunction... and you have to manage that, or those malfunctions and dysfunctions can and WILL kill you.
...In fact, it's very rarely the cancer itself that kills you directly, its the combination of all the other issues the cancer causes, simply overwhelming your bodies ability to function.
That said... I am certainly looking forward to the day I can stop taking about half of the meds I currently take... which I will be able to, if this time is like the last four times Ive been through this. Within a few months of the cancer going into remission or being removed, I was able to drop MOST of my meds.
... Not all by any means though... Since some of my meds aren't for the cancer and side effects (ADHD, inflammation and arthritis, some of the nerve issues), and the cancer itself has done some permanent damage, requiring medication for the rest of my life (thyroid meds for example, and some of the nerve meds).
All of which together is why I say, how can this NOT be funny? It's so completely absurd, its barely believable... and in fact my docs often DON'T believe it until they see it themselves. They don't believe the tests, or the past records because "that can't possibly be right... you'd be dead... you shouldn't be able to walk, or stay conscious, or your heart or brain should have failed already".
... Yup...
If that aint frikken hilarious, what the hell is?
Monday, December 27, 2021
the Dubious Distinction of Being First?
Wednesday, November 17, 2021
The trouble with Citrix
Tuesday, November 16, 2021
Kafka got nothin' on Taxachussetts
Sunday, October 17, 2021
It might help you, or someone you know
Thursday, August 26, 2021
Been putting this off as long as I could...
Wednesday, August 25, 2021
You have to pay attention
Tuesday, July 06, 2021
Papers and Letters and Keywords, Oh My!
Sunday, July 04, 2021
Independence Day
Sunday, May 23, 2021
Invaluable Phone Rescue Tool
Tuesday, May 11, 2021
The most important technological development in... wow
Wednesday, May 05, 2021
Potentially better news
I had my first meeting and first sample collection for the first series of genetic testing, with my new oncologist.
She's one of the leading oncologists in biologic and genetic immunotherapies. The good news is she thinks that yeah, the large defined mass circled in green is almost certainly cancer, but there's a good chance the orange stuff is either not cancer, or is not sufficiently advanced that it I wouldn't be a good candidate for immunotherapy, and that I have a good chance of responding well to it. Maybe double or triple the chance of surviving a year or more than my surgeon was thinking...
...If... and it's a BIG IF...
...the genetic testing comes back showing that I am a good candidate and the cancer is the right kind of cancer with the right genetic and molecular makeup.
Oh and yeah, there's apparently new kinds of pathology and new kinds of molecular testing of the cancer tissues that helps them tailor the treatment exactly to your cancer, with biologic or genetic immunotherapy.
I'm having a biopsy in the next few days or week and they'll send that tissue out for both genetic and molecular analysis, as well as conventional pathology. Those various series of tests are going to take 3 to 6 week.
So... yeah... I'll know more in 3-6 weeks
Monday, May 03, 2021
Time to go BACK to War
I had a consult with my oncological surgeon... and it was pretty bad news.
What it comes down to, is about an 85% chance that I'll be gone within a year, and about a 15% chance of survival.
I'm attaching two pictures here. These are frames from my PET scan with contrast. The hotspots circled in red are definitely cancer, that we already knew about.
Those are in my neck. The rest, are in my lungs, and that's the problem.
The hotspots in green, are almost certainly cancer... That we didn't know about until the PET scan. It's not confirmed, but it isn't just a hot spot on the contrast, there's also some visible structure in the CT... it's about 85% certain that its cancer.
... And this cancer would be inoperable.
The orange hot spots are potentially cancer, because of the hot spotting, but they don't have much or any structure visible in the CT without contrast. They're only about 15% likely to be cancer. However, if they are... then they're likely not treatable, and I likely only have a few fairly unpleasant and painful months left to live. Less than a year certainly.
If the only new cancer is the green, then theres a good chance that I am a good candidate for immunotherapy. My care team is consulting with several different oncology specialists now, and will get back to me soon with potential treatment options.
My next year is... likely going to be very difficult, and very painful. If the treatment works, great... but it's gonna REALLY hurt the entire damn time.
I'm not sure how much longer I'll be able to work... My plan is to work as long as I can, and then try to use my short and long term disability insurance... See how that goes.
But what it comes down to... is that I'm probably dying.
If that happens... I'm OK with it. I came to terms with that back in 2012 when I had just a 4% chance of surviving.
But my plan, is to survive, at least long enough to see my son graduate college... and he's got another at least 14 years to go... so... time to go back to war.
UPDATE:
I had my first meeting and first sample collection for the first series of genetic testing, with my new oncologist.
She's one of the leading oncologists in biologic and genetic immunotherapies. The good news is she thinks that yeah, the large defined mass circled in green is almost certainly cancer, but there's a good chance the orange stuff is either not cancer, or is not sufficiently advanced that it I wouldn't be a good candidate for immunotherapy, and that I have a good chance of responding well to it. Maybe double or triple the chance of surviving a year or more than my surgeon was thinking...
...If... and it's a BIG IF...
...the genetic testing comes back showing that I am a good candidate and the cancer is the right kind of cancer with the right genetic and molecular makeup.
Oh and yeah, there's apparently new kinds of pathology and new kinds of molecular testing of the cancer tissues that helps them tailor the treatment exactly to your cancer, with biologic or genetic immunotherapy.
I'm having a biopsy in the next few days or week and they'll send that tissue out for both genetic and molecular analysis, as well as conventional pathology. Those various series of tests are going to take 3 to 6 week.
So... yeah... I'll know more in 3-6 weeks.

