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.

Well... Hell... Time for Round 5

 

I have been struggling with when and how to talk about this for a while now...

A few months ago, my blood sugar started rising again... after having been falling on its own without requiring insulin for almost 2 years. I also started having recurrence of other symptoms, which I had experienced 4 times before...

As it happened, I was starting a new job, and my new health insurance wouldn't be active until September 1st... and then I had to get a new endocrinologist and get the process of confirming the diagnoses started. 

I just got the ultrasound report back today... Its been an almost two month process to get here... and the cancer is definitely back.

Well... hell...

The good news... so far it doesn't look bad. Only 13 suspect masses, 10 of which are small and may not be cancerous. 3 larger ones are definitely cancer... they're all more than in inch in every direction.

That said, they are all round or ovoid, and they're free not implanted or infiltrated... I can actually move one of them around with my fingers its close enough to the surface... and the larger ones seem to be encapsulated well. 

Those are all good signs. 

I've also had supporting blood work, which was mostly good... my CEA, creatinine, calcitonin, and thyoid antibodies are all good... which means there is no recurrence of medullary or C-cell anomaly cancers. My thyroglobulin was pretty ridiculously high (1800) and theres some kidney damage that is probably leftover from the rhabdo and the paraneoplastic insulin resistance... but may indicate spread elsewhere. 

Next steps are biopsies of the masses, and then a full body contrast MRI to look for distant masses.... particularly on other organs. 

The good news is it looks like there was no spread into my chest... the cancerous nodes all seem to be among the few left in my neck after the last three radical neck dissections. None of them were in the mediastinal area, which would indicate direct spread... There's still a chance for distant spread, but hopefully it's just local lymph nodes... the MRI will confirm.

So... hopefully, the solution should be just another round of surgery... maybe another round of radiation after... we'll see. 

My work is 100% supportive of me, it should all be good there. And I should be able to work right up to the surgery, and be back working the next week.

Alternate Means of Communication

 

If anyone wants to arrange more secure messaging that respects users privacy, I'm on Signal, and I strongly recommend it to others. 

I've switched mobile providers and was unable to port my old number, so I've got a new Signal account. Message me directly to arrange contact transfer.

Oh, and in case anyone wants to connect there, I'm also on MeWe: https://mewe.com/i/cbyrneiv

And on Parler: https://parler.com/profile/Cbyrneiv

Though I don't really do much with either, since there isn't much to do, or many to do it with.

And of course, like everyone I'm still on facebook at: https://www.facebook.com/cbyrneiv/

And twitter at: https://twitter.com/chrisbyrne

Haven't done an EDC post in... uhhh... I dunno, 7 years? Ten?

 Since I haven't done an EDC post in approximately forever... this is what I just carried out to dinner with me, and represents my normal pants (and wrist and neck) Every Day Carry.

I also usually carry a small cross body bag with my medications, a 25000mah slimline USB battery bank, some chargers and cables,a USB/bluetooth DAC and headphone amp, some USB drives and little security tools, additional spare ammo, a multi tool and a multi screwdriver, a notebook, some pens, and my kindle.

I also usually go out with a collapsible but 600lb rated aluminum cane... which is a formidable piece of kit by itself (and it has another flashlight in the handle).

So, from top center, clockwise:

1. Soon to be replaced Samsung Galaxy S8 plus, with Linsoul KZ-ZSX in earmonitors, on a waterproof APTX bt5 cord.
   
   
2. Case Edifice ECB-900 solar smart chronograph (it syncs with phones and atomic clocks etc...
   
   
3. Kershaw Ken Onion S30V Blur
   
   
4. SureFire Stiletto Pro flashlight
   
   
5. KenaKai RFID/NFC blocking wallet. The wallet itself has a metal mesh faraday cage as its lining, and is opaque to x-ray. Inside, in addition to normal wallet items, are a concealed set of lock picks, a concealed knife, and a concealed handcuff key
   
   
6. Custom Springfield EMP (I did a full action, reliability, and trigger on it... it was a gift from my girlfriend), with a simple belt slide holster, and a spare mag... a total of 19 rds of Federal HST 9mm +p. I'm thinking of putting the green laser CT laser grips on it.
   
   
7. A microfiber cloth... it's what I carry instead of a handkerchief
   
   
8. CRKT Get-A-Way driver on a QD clip, to a QD web strap key chain, which attaches to a real 1600lb rated 80mm D-ring carabiner (I wear a rescue belt, which can be used with the carabiner to lift me or secure me to something if necessary).

The StilettoPro by the way is brand new today. Prior to that, and for the last almost 20 years, on my keychain I have carried this single AAA all titanium type 3 hard anodized 25 lumen LED light made by a local aircraft aluminum/titanium fabricator, called the ARC-P (the "premium" version of the ARC-AAA).

Arc went out of business 16 years ago, but the light itself is tiny, light, and indestructible. I will probably keep it clipped to the d ring in my daily carry bag.

Honestly... I cant think of much of anything I could do to improve this setup... I'm pretty happy with it... except I would like my 340pd back as a backup pocket carry gun.

Friction

It seems the older I get, the less tolerance I have for what user experience (UX) professionals call "Friction".

Friction, is simply anything that reduces the efficiency, effectiveness, or pleasantness of the user experience, as compared to the optimal possible, or intended experience.

When I was in my teens and twenties, I had seemingly infinite tolerance for things that were inconvenient, or difficult, or fiddly, or unpleasant; if doing so got me some kind of performance gain, or even an extra "cool factor"... Or just because I wanted something interesting or different.

I would put up with machines and systems that broke down frequently, only worked if you played with them just right, or took MANY hours of work to set up properly... In fact not just put up with them, but enthusiastically extolled their virtues and recommended them to others... Sometimes even passionately defending them when others complained about the inconvenience and irritation. 

...Frankly, I just don't have the time, energy, and patience for that anymore, unless theres some HUGE advantage to doing so, that makes the pain in the ass worth it...

...Some examples...

I haven't bought a pre-built desktop for use as my personal primary machine in... Literally decades. The last time was while I was in college, and my computer broke, and I had a project I absolutely needed to finish that weekend, and it was my only option.... I could fail that critical project and have to repeat the class, or I could buy a system from Sears (a packaged hell no less... but I was smart and bought the extended warranty, so they fixed it for free for 3 years... in fact they actually replaced it completely... twice... upgrading it to a higher model each time). 

I always build my own PCs, because even if someone else can build something for me to the standard I want, they charge a lot more for it than if I built it myself... Because of course they do. Skilled labor costs money. Integration costs money. Support costs money. Testing costs money. Warranties cost money. 

...But right now... I'm looking at some of the very high end prebuilt systems from specialty vendors, and thinking "Damn... that's really good. It's exactly what I would do"... and some of them have specialized cooling systems and cases that I literally could not buy and build with myself. In terms of system integration and industrial design, they're actually just plain better than what I can build myself. They're a few hundred dollars more than what I could build myself with the same basic specs... and they may be worth it... For the first time ever. I'm seriously considering just buying off the shelf, and thinking it may actually be better, not just more convenient or easier (though I'd still put more RAM and a bigger SSD in the machine after the fact... Because NO-ONE ever includes as much ram or storage as I want). 

Using Macs for work is another example... They're just very well integrated, well tested, polished solutions that significantly reduce friction. They give me the power of a real UNIX, while giving me great UI/UX, and physically excellent hardware and industrial design.

I'm still not at the point where a Bose or Bang and Olufsen stereo appeals to me... Or any kind of "home theater in a box" for that matter.  The performance you can get assembling your own properly matched components, for MUCH less money, is so much higher, and the inconvenience and friction of doing so is so relatively low, that the minimalist hyperintegrated hyperdesigned systems hold little appeal to me... But I can understand why someone might feelthe other way.... they just don't want to bother with it, and they want good sound, and don't care shout getting great sound. 

...And... dirty little secret? Just for watching TV, I am actually a fan of the better soundbars, which have satelite speakers and subwoofers (some even have wireless connections tot he tv, subwoofer, and surround speakers). They're simple, they're cheaper than a full stereo, and they actually sound pretty good, for most movies and tv shows. I still prefer to have a full home theater for my main TV, and for the best music experience... but I recommend soundbars to other people all the time, and for a secondary tv, I TOTALLY go for the soundbar.

Even with guns... and I'm an experienced gunsmith who builds long range precision rifles for fun... Some of the out of the box solutions available today for long range precision rifles from Ruger, Sako/Tikka, Savage, AI, and others, have real appeal to me. Well integrated, well tested, well designed systems that give better than 90% of the performance of a full custom solution, often for a lot less money.

That doesn't mean I don't still want to build the full custom rifles, to get the most possible performance and have the features and configuration EXACTLY as I want... But I also want to buy one of the standard offerings, to get back into things faster, and for practice, and to help get others into the pursuit of long range precision shooting etc...

This applies to almost every area of my life... I love building and modifying cars, and motorcycles... but buying a well designed, well tested, well integrated car, now has as much appeal to me as building my own hyper customized optimized car. 

I really wish I could find good commercial desks and workbenches that would actually work for me. I still build my own desks and workbenches and beds, and toolstands, because I just can't find what I want commercially... I want specific sizes and specific strength, and rigidity and features... But I wish I COULD just buy them off the shelf. 

...I still want to do the custom builds... but I find great appeal in buying the well integrated commercial solutions  first, just to have something that is 80% or 90% as good, so I can take my time and so the rest absolutely perfectly the way I want.

A very happy holiday weekend for me indeed

I'm happy to announce that I will be starting a new job, Monday July 13th. I'll be security architect and engineer for a global web/video/teleconferencing company, on a 100% work from home basis. I really like the company, and the people I'll be working with, and I'm very excited about this. Wish me luck.

Y'all Dudes Are Culturally Appropriated and Stuff

I am a native New Englander, born in south Boston, and grew up split between New Hampshire and the southern suburbs of Boston.

I don't have a Boston or New England accent... I pronounce the letter R just fine... Though I do use the words "sure" and "ayup" for "yes" reflexively... something of a New England stereotype.

I am not a southerner, or Texan... though I have lived nearly half my life in the southeast, Texas, and the southwest... and I use "y'all" many times a day. Because it is a very useful word.

I am not a Californian... though I did live in NorCal for several years... but I use "dude" many times a day... because it is a very useful word.

I have culturally appropriated these good and useful words from the south and California, because they were good and useful words, and I am absolutely not sorry about that.

You Like Me... You REALLY Like Me...

At peak, my blog was averaging about 2,500 to 5,000 unique views per day... a few times I went as high as 25,000, and a rare couple of times I went over that...

But I nearly stopped writing on the blog in 2015... and had been writing a lot less since 2013. I wrote more than 3900 posts from 2005 through the end of 2014... I've written exactly 145 posts in the 5 years since.

... But there's something funny...

As late as the end of 2018, I was still seeing up to 2500 uniques a day, and now, 5 years since I stopped posting every MONTH (I've averaged about 2 posts a month in over the last 5 years), never mind every week or every day... I'm still getting between 500 and 1,500 unique page views every day... That's how much my writing is out there, circulating, linked and referenced in other peoples posts, on forums etc... And how often is shows up in searches for the topics I write about.

... And that feels pretty damn great...

Travelling Back From Out Of The Fog

A few years ago, I decided to deprioritize the blog... for several reasons.

First, my life was all cancer all the time, and I really just didn't feel like I was writing much worth reading that wasn't about the cancer and the impact it had on our life.

Second, and more relevant to the current state of social media, is that in large part, people stopped commenting on blogs... They would comment on twitter, or facebook, or reddit, or wherever they found the post, or had the post shared with them etc... but they wouldn't actually comment on the blog itself.

... The discussion moved away from the platform... and that killed the entire point of blogs, which was to actively engage with readers and commenters. Otherwise, it's just a web site... or worse, a livejournal...

So, I moved my primary social media activity and most of my new writing, from this blog, to other social media... Mostly facebook, with a little bit of twitter, and eventually a little bit of MeWe.

... I still occasionally posted, as my loyal readers hopefully noted... but often I went months at a time between blog posts.

However, I am generally a long form writer... I've got several blog posts exceeding 10,000 words, and at least a couple exceeding 20,000 words... and across the last 15 years that Ive been writing in this space, I've managed to write a couple of series of posts exceeding 100,000 words, which is entire book length.

... And Facebook isn't exactly well suited to long form writing... though I've still managed to write a fair few long form posts anyway.

Well... For quite some time now, a lot of my readers and friends have asked me to start posting my longer FB posts back to my blog... at the very least because FB makes it extremely difficult to save and find posts later, and it can be difficult to link to or excerpt a post when you want to etc...

As it happens, I had already decided to do so... and few days ago I mentioned I was already in the process of doing it... But, you have been following both FaceBook AND the blog all along, you may have noted I hadn't done so yet (or at least not until a few minutes ago).

I haven't forgotten about doing so... I'm just in the process of collecting, cleaning up and re-writing in blog format, and then scheduling those posts to come out one or two at a time, so i'm not flooding the blog with tens of thousands of words all at once.

... So... why now?

Well, a few reasons... For one thing, I've noted that some people are starting to engage with long form writing and blogs again. Also, my life, while not exactly great at the moment, is at least no longer all cancer all the time, so I feel like I can write more about what I actually want to write about.

... But there WAS something specific that prompted me to act on the notions that have been stewing for months, where I was hesitating before now...

For the last 10 years, I have suffered from what I, and other cancer warriors call "cancer brain"... I have had long and severe bouts of  overwhelming fatigue, lack of clarity and focus, writers block, and even readers block, where I literally can't concentrate or focus enough to read, sometimes for months at a time. I have spent days, weeks, months at a time, going in and out of what those of us who suffer from it call "brain fog"... where I can have seemingly normal function, even be reasonably intelligent and clever and seem to write reasonably well... but it's not me... it doesn't feel right, it doesn't... work... It's not good work and good writing, or at least not good enough. I try to grasp ideas and work with them, and they just slip away. I try to write the proper words to say what I really mean, in the way I want to say it... and I just can't.

... But there have been moments when I came out of the fog, and WAS able to do good work... even some things I thing are great. Among the best I've written... They're not common, but they have been happening more and more, as I recover more and more.

A few days ago, I managed to write about 20,000 words, on several different subjects, in just a few hours... I think maybe some pretty good ones, as I have strung them together.

My brain started working close to how it should for a few hours... Waking up after a good quality sleep with less pain and no reflux (for the first time in days) was undoubtedly a big help there... but sometimes, in the midst of the fog, I hit a clear patch, and can think, and write, and be productive, at least a bit like I used to.... And hopefully will again.

And in that clear patch,  I wrote wrote couple of the best things I've written in a good long while, as well as a couple of linked posts that are...

...Let's call them interesting seeds, that will hopefully grow from possibilities in peoples minds, to interesting realities in peoples lives.

So, I decided that I would stop letting the perfect be the enemy of the good, and at the very least, post here, whatever I may write that I think is good... or that may plant interesting seeds in peoples minds...

...If I can achieve that... it's something worthwhile... And you can't hope for much better than that.

A Little Advice, for the Quarantine Cook

The three biggest "secrets" to restaurant foods... what make them better than most peoples home cooking... are pretty simple:

1. Use more flavorful fats... Butter, bacon grease, olive oil, peanut oil, coconut oil, whatever flavors complement what you're cooking. Home cooks rarely use enough, and often use bland plain vegetable oil, or even worse, margarine.

2. Use more flavorful liquids... Unless you're boiling pasta, or plain white rice (and even then, always salt the water), never use plain water when you can use wine, or beer, or broth, or stock, or lemon juice, or orange juice, or at least salted and/or acidulated water (water with acid added to it), or of course milk... and  never use milk when you can use half and half, or cream.

3. Use more salt and other seasoning than you think you should... and season BEFORE your food hits the pan, then check the seasoning while cooking and season again, then check again before serving and adjust a final time. 

Home cooks mostly badly undersalt and under season their home cooked food (as opposed to fast food and most processed foods, which have a ton of sodium). And don't forget general flavor boosters like finely minced fresh garlic or shallots cooked out in the fat, toasting your spices in the fats; using chicken or beef broth base powder, or powdered instant coffee or espresso as a flavor enhancer; and adding umami boosters like soy sauce, hot sauce(especially fermented pepper based like Frank's Red Hot), Worcestershire sauce, real naturally fermented vinegar, aged hard cheeses, MSG, etc... 

Oh and one final thing... a technique issue rather than a secret ingredient... 

Most home cooks don't use enough heat... they're afraid of burning things, and don't use enough fat, so they cook in dry cold pans, which cook slowly and unevenly. Instead of searing or sauteeing, they end up steaming or braising or par-boiling their proteins, making them dry, tough and flavorless. 

Proteins (except maybe foie gras and some delicate seafoods) should ALWAYS go into a well fatted, and ripping hot pan... even if you then turn it down just after, adding proteins to the pan will suddenly drop the temperature, and you will have a hell of a hard time to get a good sear or proper sautee going. 

If you need to, you can turn the pan down once the temp drops, and the first bits of water evaporate off.

Strength, Recovery, and Gratitude

This started out as a light and fun post in my head... but as I started writing... it got kinda long, and serious... and then it got very long and very personal and very serious... but I have to get this out, and y'all are my friends and the people I love, and who love me.. so... if you're interested... here it is... 

...I warned you...

Now that I'm back on a full dose of thyroid meds... after three months of taking the minimum dose to keep me from going myxedemic, before I was able to get a new prescription... and given the recovery I've made over the last 18 months... I've been feeling like it was time to start working out again.

I still need to get back on my testosterone, modafanil and adderall, to be able to really be OK mentally and physically... and particularly the testosterone to really build any muscle back up very much for that matter (I need to raise the money to get a local doctor, and blood work, and then pay for the scrips)... but I'm recovered enough that I feel like I can get started back again at least. 

I don't have a functioning vehicle (I have a motorcycle, but it needs a new clutch and I don't have the cash for it) and I can't walk more than 50 yards, so I can't get to a gym regularly. We don't have any free weights here, and I don't have the money to get any... 

...But...

...We DO have a Bowflex Ultimate 2, with all the attachments, that has just been sitting, broken down for a few years and gathering dust... 

Now, I would much rather have free weights... and eventually I will again...  But a bowflex is actually great for circuit training, and honestly, that's what I need to be doing right now. Light weights, high reps, get into the aerobic cardio heart rate zone, and not strain my back too badly while I rebuild my supporting musculature.

So, my project for the day, is to clean up and get this machine working again, and then do my first real workout that wasn't physical therapy, since 2012 when I had my first round of cancer surgery and radiation. 

Christ... It really is almost 8 years since I've been able to work out at all... I have a hard time with that honestly... 

I was still recovering from the first round of cancer and radiation... and moving across the country FIVE times in three years... from 2012 until 2015. Then we found the next round of cancer in late 2015,  and then the next round after that and my spinal injury in late 2016...  and I was literally bedridden from late 2015 to late 2018... and now its 18 months of recovery from my last round of cancer surgery...

...and finally, I can start working out again....

I don't really have the words to describe what that means to me. 

I started in Jui-Jitsu when I was five, wrestling when I was 12, football and kenjutsu, and serious weight lifting when I was 13. Then power lifting when I was 14, and finally the SCA, and fencing (I fenced saber in college) and what they now call HEMA (whacking each other with medieval through rennaisance swords) when I was 16. 

From age 13 to age 30 I worked out almost every day... I was a serious competitive powerlifter, a football player, an airman and officer, a fencer and swordsman, a wrestler and juijiteiro... and I was strong, always... Even after I busted my knees up bad, other than running, I could always make my body do what I needed it to do, always lift that weight, always move that thing that nobody else could move, always carry that pack that was too heavy for everyone else... 

Then I started getting sick... And gaining weight... In less than 3 years, I gained over 200 pounds... But still, from  30 to 35 I worked out whenever I wasn't too sick... Which was less and less as I got worse and worse... and now after 8 years of being too damn sick, too broken down, to crippled up, to even work out at all...

... I can finally start again... 

I'm sorry that I'm rambling and repeating myself...It's just... Kind of a very big deal for me.

Up until my spinal injury... Being the strongest guy... or at least one of them... in almost any room, was a big part of my identity, and my sense of self. Not in a meathead ass kind of way... just... Knowing that whatever it was, I could handle it...  

Even when I was sick I was still the guy who hauled a 350 pound couch onto my back and took it down two flights of stairs and out to the truck.. I was still the guy who picked a 480lb lathe off the truck lift gate, and hauled it into my shop, when the truck driver  couldn't get close enough to the concrete slab, and would have had to unload it into the gravel. I was still the guy who was stupid enough to take a situps challenge, and do 200 situps in less than ten minutes  just to prove I still could, when somebody assumed I was just some fatass, and I just NEEDED to prove them wrong...

Immature? Petty? Stupid? Yeah,maybe a little... But you have to understand just how much being seriously chronically ill strips away the things that make you feel like yourself. And how hard you feel like you have to hold on to them. How not being able to walk without a walker for two years breaks down your self image. How not being able to get to the damn bathroom and having to use a commode for 18 months strips away so much of what you thought you were... How not even being able to get put of bed, and  being comoletely dependent on others for... everything... How that breaks you down.

...Through it all, I have always kept in my head and my heart... that core of me... the man who absolutely cannot be defeated... the man who has fought, and been broken down and damn near destroyed... but never defeated. The man who was too exhausted to keep fighting, but still SURVIVED when I couldnt fight anymore... The man who lived, when it was all I could do to live... when dying was so damn easy, and living was impossibly hard... 

When my body was useless and dying, and I couldn't even complete the basic tasks of keeping myself alive without help...

... At my core, I always held that... I don't know what to call it... hope, knowledge, conviction... that WILL... that CERTAINTY... That eventually, I would get back to being ME again. I would be able to think clearly again. That I would be able to write again. That I would be able to work again...  and that eventually  I would be STRONG again...

Over the last 18 months... since leaving a literally toxic environment that was killing me, and keeping me from recovering... I have lost over 100 pounds (I still have another 100 plus pounds to lose, but I've done pretty damn good so far). I have recovered more of the muscle tissue destroyed by my spinal injury and the resulting rhabdomyolysis and atrophy from almost three years of being bedridden, than my doctors and I thought possible. I have recovered enough muscle tone, and enough of my supporting musculature, that I can walk 50 yards without a walker or a cane on a good day (on a bad day I can't really walk at all, but there are more good days than bad now) which my doctors were dead certain would never happen again... 

They told me that I would probably never walk more than a few feet without assistance  again. They told me I would never be able to work out or lift heavy again. They told me I would never be STRONG again... Not like I was anyway...

A few days ago, I did 50 crunches... just to see if I could

It HURT... but I could do it. I could barely move the next day... But I still did it. 

I have recovered more than those who didn't really believe in me... even those who I thought loved me and supported me... ever thought I would.

I have recovered more than even I thought I ever would, or could... 

... And today... I'm going to use my strength again, and start working to build it back up again... I'm going to be STRONG again... I'm going to be ME again. 

And there is no way I can find the words to say what that means to me. 

... But I'm glad I tried.. because my friends, and the people who love me and care about me and support me... Maybe they need to hear this, as much as I need to say it.

Thank you.

Thank you all for keeping me alive, and keeping me going, and keeping me fighting through all of this... For giving me something to fight for when everything was ripped away from me... when those closest and most important to me abandoned me... when would have been expected to give up, to stop fighting...  you all kept me going. 

Thank you...

Time to get to work.

Callahan's Law

Callahan's Crosstime Saloon", the first collected volume of Spider Robinsons Callahan's stories... 

...My absolute favorite series of stories and novels; which, in all honesty and seriousness, and without any hyperbole at all, I fully credit with saving my sanity, and my soul; more than a couple times... 

...Was actually published on the exact day of my birth.

Thank God for that... because it, and the other two collected volumes of stories in the series, "Time Travellers Strictly Cash"  and "Callahan's Secret" (all three are now collected in a single volume "The Callahan Chronicles"), were all in paperback a dozen someodd years later, the first time I really needed them. 

... There have been many other times I have needed them since... 

And the six more novels to follow, between 1989 and 2003, which were also there when I needed them... As was Spider himself once... though only by email, no less a help for it. 

I haven't had the pleasure of meeting him in person, but my friends who have, and particularly those...more than a couple... who also call him friend; have told me he's just what I would expect him to be, from my experience with him, and his writing, and his music. He is a man who must, by nature, because of his intellect, his empathy, his sincerity, his force of will, his sheer heart... reveal himself in all he does. 

I will say without a shadow of a doubt... I would not be alive, or remotely sane today, if it weren't for Spider Robinson, and Callahans... Or if by some awful curse or terrible miracle I was, I would be in prison... or very much worse. 

You see.. Callahans law states: 

"Just as there are Laws of Conservation of Matter and Energy, so there are in fact Laws of Conservation of Pain and Joy. Neither can ever be created or destroyed. But one can be converted into the other. Shared pain is lessened;  shared joy is increased - thus do we refute entropy"

If you think you might need Callahans too... I'm happy to help you out as I can. For that matter, theres at least a few thousand people just like me, all around the world, who also know they wouldn't be here, or sane, without Callahans... and without exception, they will help anyone who needs it, if they can.

Shared pain is lessened; shared joy is increased - Thus do we refute entropy.

"Cancer Free" Doesn't Actually Mean Cancer Free...

Something many people don't seem to understand about cancer in general, and my specific kind of cancer in particular...

When you have surgery to remove cancerous lymph nodes... it doesn't CURE the cancer. You still have cancer, it's just in remission, because you don't have enough actively malignant cancer cells to detect a large mass.

Even when they say you are "cancer free", it doesn't actually mean you're cancer free, it just means there are no detectable large masses of cancerous tissue.

... And you PRAY most fervently, that there are no large undetected masses... because there easily can be... and that you have a long while before the cancer grows enough again to be a threat to your life.

You have to understand... once cancer is in your lymphatic system, small clumps of cancer cells circulate through your entire body. You just have to hope and pray they don't implant and grow... or at least they won't for as long a time as possible...

... Because, barring some kind of miracle, lymphocytic cancer ALWAYS comes back... it's just a question of how long until it does.

My cancer is currently in remission... at least I hope so, because I haven't had a post surgical scan, or my six month scan. So there very well could be more large malignant masses growing in me right now... I don't have the money to get the tests necessary to know whether I do or not.

...But the odds are about 75% that it will be back within two years. About 85% within 5. About 95% within 10, and about 99.6% within 15.

... And my own personal history proves that out...

I had my first cancer surgery in July 2012.

We detected the lymphocytic metastasis in November of 2015.. three years... and had surgery in March of 2016, when they got "all the cancer"... and at they time, they absolutely thought they had.

Six months later, in October of 2016, I had approximately twice as many cancerous nodes as they had taken out in March... and at the time, it looked liked they had got all the cancer... again...

21 months after that, I had approximately double THAT amount of cancerous lymph nods and infiltrated tissue removed.

It's been a little less than 8 months... There's a very good chance I have more cancer right now... but I won't know until I can raise enough money... or work enough... to get the tests I need.

So... yeah... That...

Trying to Survive

7 days ago, my wife of almost 13 years, Melody, left me... For many reasons.

I dont blame her for going... She told me she couldnt take what our life had become a long time ago, and I just thought... a lot of things... and I was wrong. I put her through hell, just trying my best to live through this cancer and everything else... and I screwed up a lot ifnthings...  and I dont blame her for leaving at all... and now, I just want her to be safe and happy.

We were about to lose our home... we've lost it now... again for various reasons.

I know that she is safe, and she has the dogs and cats and they're OK and safe and good... and I hope Mel can have a better, happier life without me, and without the problems that have dragged us down for years.

The boy is safe and healthy and doing well, and has been since November when the state of New Hampshire decided that Mel couldnt take care of both our autistic son, and my crippled, dying, damn near bedridden ass... I am physically unable to take care of him, and he is doing very well with my aunt so he's the best off he can be right now.

At this point, I have no home, very little money, I'm just trying to survive.... For my son.

I have no home. I am currently in a hotel, and looking for a place to live that friends and family can help me pay for until I recover from the cancer surgery and can start working again.

I have cancer surgery scheduled for July 23rd, but I'm going to lose my insurance at the end of June unless I can pay $1900 before the 30th. I have applied for Medicaid and disability and every other thing... but my surgeon and hospital are in another state, and wont pay for them without a special exception, which I dont know if I will be able to get before I lose my surgical date. My cancer is advancing and will become inoperable soon. They also recently found a large mass in my skull, but the neurologist thinks its benign and can be dealt with later.

Thank you to everyone who has helped support our family... if you want to help me survive and recover, so I can be with my son, and help raise him and give him the best life possible... I'm accepting donations via PayPal, at chris@chrisbyrne.com

What is it, and what does it mean?

I was asked a pair of fundamental questions:

What is your definition of disability?

And...

What does having a disability, or being disabled, mean to you?

Very BIG questions those... with very big answers...

A disability, is some functional area that requires a "normal" or acceptable  level of effort and difficulty for the large majority of the population, and which is considered "normal" and important to living life within a society; for which some people have either a total inability to satisfactorily function in that area; or for whom doing so, is so difficult as to cause significant problems in that person's life; or for which they require special assistance to function in such a satisfactory manner.

These can be physical, emotional, or mental.

That definition should I think, adequately address the functional aspects of both questions... social and emotional aspects are FAR more difficult and complex.

So... what are my disabilities specifically?

Well... I have limited mobility due to multiple severe musculoskeltal, and neuromuscular injuries, some with degenerative aspects in my joints and connective tissue; as well as arthritis relaated, and endocrine disfunction related inflammatory issues, which are also degenerative.

The pain from these also has general, and cognitive, disabling effects.

Then, further, I have general and cognitive disabilities, caused by stage 4 metastatic lymphocytic endocrine cancer, with thyroid, pituitary, adrenal, and gonadal insufficiency and disregulation; with associated paraneoplastic syndrome (including paraneoplastic insulin resistance), and degenerative neuromuscular and connective tissue issues.

I used to have near perfect eidetic memory... now there are times I can't remember the names of good friends, or the terms common to my profession which I have PhD level education in, and which I teach others at a postgraduate level.

There are times when I can't sleep for days... my record thus far is 12 days without full sleep (I was able to partially doze for short periods but could not reach full sleep), and more than 6 days with no sleep or rest at all.

On the other hand, there are times when I am overwhelmed by fatigue and the irresistable need for sleep, which when I am overcome, results in my sleeping for anywhere from 20 minutes, to 20 hours.... but the "sleep" is not restful or restorative.

I gained 200lbs, in less than two years, while on a restricted diet... because my metabolism simply slowed down, and I retained huge amounts of excess fluid. So much that I can still easily gain or lose more than 20 pounds in a single day and as much as 68lbs in three days, and 87 pounds in 5 days.

...Because of a specific spinal injury and little over a year ago, which caused rhabdomyolisis, partial kidney failure, and muscle death... I lost approximately 30% of the muscle and nerve tissue on on the left side of my body, from midback, down to my left foot andntoes.... I have spent the last 16 months, basically bedridden...

... and and of course, I am on my  third go around with this cancer, that is doing its best to kill me...

That's just a small subsample of the issues that have developed over the last 15 years that I have been fighting my illness.

So... it's understandable why I look in the mirror and sometimes, see a stranger, who only barely resembles "me".

Socially and emotionally... For me... I'm not someone who has ever given much of a damn about what other people, or "society" think... I am internally motivated and internally validated, almost entirely.

I am also someone who, for most of my life, both physically, and intellectually, outperformed almost everyone... There was very little I couldn't do, if I was sufficiently motivated... to a level that others might consider insane in itself...

For me... emotionally... what having severe disabilities has meant.. was that my body betrayed me, and made me... not me anymore.

Flowers for Algernon...

What I'm Up Against

So... Just so you guys know what I'm in for next week... and the next few months...

The surgeon had a cancellation, and now my presurgical consult is on the 6th, and I'm tentatively scheduled for surgery on the 7th... there may be a conflict with the OR scheduling, in which case it may be the following week, we're not sure yet.

At this point, most of the lymph nodes in my neck are cancerous... at least 9 are over 1.5cm... a couple of them are over 4 cm... it's not great. A couple of them are just under the surface of the skin, and you can actually see them distorting my neck.

I'm going to have what's called a radical neck dissection.

Basically, my entire neck, and parts of my shoulders and upper chest will be cut open and dissected to ribbons, pretty much down to the bone, including at least separating, if not severing, most of the muscles, tendons, and ligaments in my neck...

They do this to get room to see and cut out the cancerous lymph nodes, and other masses, and then one or two more lymph nodes beyond the cancerous ones.

That means they'll be cutting up all the muscles that I chew with, swallow with, hold my head up with, speak with... yeah...

They may also need to cut shoulder muscles... and there will be some tendon and ligament damage, even if they don't have to cut any of them... and they may need to cut some of them...

Worst case, they may have to go into my chest, under the sternum, and around my lungs... We know that the lymph nodes around the mediastinal notch are cancerous, so they're going to have to go at least that far... if they have to go more... Well, that's not great. It basically doubles to triples the trauma, and the recovery time.

...and there is likely to be substantial nerve damage no matter what, including potentially some nerves being completely dead permanently.

After my surgery, I will need to stay in the hospital for anywhere from 2 or 3 days, to more than 2 weeks, depending on how my healing gets going.

I won't even be able to chew, swallow solids, speak much, or hold my own head up... for at least 6 weeks, and possibly as long as 3 months.

... and it's going to hurt... a lot... the whole time...

I may permanently lose a lot of strength, mobility, and control, in my head and neck, and may suffer permanent pain, from the damage.

I may also lose the ability to raise my arms... or raise them above waist or chest or shoulder level... or I may need to go through extensive rehab and PT to do so...

It's possible I may lose my voice, in whole or in part, for an extended period of time... Possibly permanently.

Oh and I'll be on a liquid diet for at least the first six weeks, possibly as long as 3 months.
Then, as soon as I am healed enough to be beyond major risk of secondary infection, and I can get up and out of bed without assistance... that's when the radiation starts.

... And that's another three to six months of baseline recovery time, depending on whether I need one or more courses of radiation...

During the radiation, I will have no immune system, and I will also be dangerously radioactive to other living creatures... Including my wife, my son, and my dogs... so I will have to be in isolation... One of the reasons we kept this house, we because it has an area where I can be in isolation.

That's gonna be fun...

... and then 18 months of recovery time for all of the above after that... Recovery from radiation, rehab and physical therapy, and hopefully getting some of my immune system back... Basically all the things I went through in 2012 only worse.

God...

Yeah... I'm really not ready for this again... It was... living hell the first time around... now...
... The only thing that keeps me going, is that I need to be there for my family...

If anyone wants to help out... Melody is handling everything because I'm going to be useless for months... but we can always take donations through paypal at chris@chrisbyrne.com and here's the gofundme link:

https://www.gofundme.com/kdmtkm6k

Who "Spoons" A Fuck?

"I'm all out of spoons"...

Yaknow... if it works for you, great... but I hate the spoon thing...

Yes, the concept makes sense once you explain it... but using spoons for it is just arbitrary and silly... there's no logical or metaphorical connection. It has to be explained to someone, rather then being intuitively understood, or there being a clear chain of reasoning to get there themselves.

I prefer it this way...

On a given day, I have a variable number of fucks to give.

Some days I have a lot of fucks to give. Some days not many at all... some days in between.

I don't know how many fucks I will have to give on any given day.

Sometimes I can estimate how many fucks I have to give that day, while I'm giving them, and I can manage them reasonably well.

Sometimes, I run out of fucks to give right in the middle of something, with no warning.

It takes a variable number of fucks per hour, simply to stay alive.

Some days... some hours even... that number is lower... Some much higher.

It takes a variable number of fucks to deal with pain, and stress...

...again, some days... or hours... relatively low, some days quite high.

Some days, I run out of fucks there... or even before... and there is more pain and stress that day, than I have fucks to give...

...Those are very bad days.

It takes another variable number of fucks to deal with whatever shit I absolutely must fucking deal with that day.

Some days I run out of fucks to give before I can deal with that shit.... Some days I don't.

Mostly I get around that by minimizing the stuff I absolutely MUST do, and either stack it all up for one day I can expend exceptional effort on, burning extra fucks on willpower and drugs...and then recover for several days... Or I try to spread them out and be flexible... so that I can get shit done when I have the spare fucks to give.

... a lot of times I have to have someone else give those fucks for me, or it just won't get done in time... and that really fucks me up...

Whatever fucks I may have left to expend at that point, go to whatever else there may be in this world.

First, to my wife, kids, family, friends... the people I love and care about, and who care about me...

They get all the fucks I can give them... or they can stand from me...

Then, to "leisure activities"...

...Which, since I'm way more than broke (right now I can't even pay my medical bills, keep the lights on, keep a roof over our head, or keep transportation), without a vehicle, very sick, and in a lot of pain...

... Mostly consists of reading, watching videos, and "social media"... and frankly, my focus and attention for reading has been horrible for a couple months...

... honestly, right now I can barely get through a web article and remember it at the end some days...

...Worst thing, is that for a couple months now, I can't seem to just sit and read a book to save my life (one of my favorite things in the world, and one of the very few things that relaxes me at all... and something where when Im healthy I can and will gladly read several books a day). I start reading, and I lose focus, and read the same page over and over and forget what I was reading...

... Really,.. that one... that one really fucks with me quite badly... I've been here before, and I really don't want to live through fucking "Flowers for Algernon" again... It's... Not worth it for me... and it's fucking hard to do it even for my wife and kids...

...but anyway, those fucks go to keeping my mind occupied, and amused, and distracted from the pain and the stress and everything else...

Finally, very last of all, are whatever the fucks I may have left to give for everything else...

Among the "everything else", that I have had so few fucks to give about recently...

...Taking the time, effort and energy, to bother deeply explaining things to, persuading, or arguing with other people, who don't bother making even the most basic effort at listening, learning, or thinking.

Sometimes I will still make an effort...

If those other people are worth bothering with... great... Makes me feel good, and if I help somebody learn something new, or help myself learn something, even if it's how to better present the information... spectacular... It may even replenish some of fucks to give... which is great. It's why I ever bother doing any of it at all.

Or if it amuses me... that's always worth doing...

But most of the time... it's just not worth giving a fuck...

Shit, when I really want to, I can turn people around 180, and make them think it was their own damn idea...

... But that takes a hell of a lot of giveafuck...

... and unfortunately... about most things, for most people...

....I've just run out of fucks to give.

So, unless they're someone I like or care about... or I think they may be worth it... Or I think that their particular brand of stupidity, or leaving them ignorant, would be harmful to people or things I care about... or even harmful to the world as a whole...

...Or if they annoy me enough I can't let it go...

... Or if it would amuse me to fuck with them...

...Most of the time, they're absolutely not worth wasting a fuck on.

I just don't have enough of them right now, that I can afford to waste them.

Fuck cancer... Fuck it up the ass, sideways, with a rusty chainsaw...

So... its a bad news good news kind of thing...

God I had hoped I'd never have to write something like this...

The bad news, is that I definitely have either a recurrence, or additional metastasis, of cancer... Either way, this still counts as stage 4, as it has spread to multiple systems.

The cancer appears to be in at least one of my parathyroids, and at least 8 of the lymph nodes, around my thyroid bed (left and right sides, and bottom at least... and its likely to have spread to most or all of the anterior cervical and superclavicular nodes). Most of the enlarged nodes are under 1.5cm, but at least one of them is grossly enlarged to over 2.5cm, and at least one parathyroid is grossly enlarged as well.

So yeah... technically, I have stage 4 metastatic lymphocytic cancer...

That's pretty bad.

The GOOD news is that it doesn't seem to have had any distant or systemic lymphocytic metastasis, or metastasis outside the typical local spread common to these kinds of cancers.

The BEST news... It doesn't seem to be either of the two REALLY bad varieties of cancer that it could have been (there are strongly negative indicators saying it isnt).

If it was one of those, it would be effectively untreatable, and I'd have a few months left to live on the outside.

It's HIGHLY unlikely to be either of those, based on existing blood test results, and general evaluation of the current diagnostic data. This will be confirmed with pathology on the tumors, and further blood tests.

So, yesterday afternoon, I had FIVE FNA biopsies (somewhat uncomfortable having needles stuck into your neck over and over again... and it stays uncomfortable for a coupel days), and more blood tests; to narrow down what the cancer subtype and pathology are exactly.

Once we have that nailed down, I"ll get more imaging to ensure it hasnt spread further (there's a moderate probability it may have spread to some of the nodes in my chest as and a small chance it could be in my liver or in other areas).

It could still be one of several moderately bad types of cancer, or a greater than anticipated metastasis; with as little as a 40% positive short term and 25% positive long term prognosis... but that seems unlikely at this point.

Most likely, I have something like a 75% to 92% positive short term (1 to 5 year) prognosis, and a 40% to 80% positive long term (5 to 10 year) prognosis.

So that's good.

I'll write more later...

Ten Years Gone

Honestly... I don't even know how it's possible this day has come... I should have been dead before I ever met her... 100 times over...

I've had almost everyone I've ever been with tell me that I was incredibly easy to fall in love with, and incredibly hard to stay with... to keep up with, to put up with... I've always been "too much" for everyone.

But here we are... 10 years later... Through hell and back, and through it again... and on our way back out again...

10 years...

Happy Anniversary to my wonderful wife, Melody Byrne.

You just... you have to laugh at the absurdity of it all...

Well... This is one of those things that would be funny... and is just... absurd...

Mel was transferring the rest of our stuff from a friends house to our storage unit, and had put a bunch of that stuff up on the front lawn, waiting to load it into the truck.

Then she and our friend went into the garage to get that stuff ready to load in the truck.

While they were in the garage, someone came by the front yard, and took most of what was out there.

It ended up being a couple thousand dollars worth of clothing, shoes, electronics, and furniture that they took... Including a lot of Mels clothes, a lot of the boys clothes, and most of what was left of my business wardrobe (I'm now apparently down to 3 pairs of pants, three collared shirts, and two button downs... That's not good).

It was also several hundred pounds worth of not obviously saleable things (all but the furniture was packed in bins ready to load up).

...And this is in Milton, a town with effectively zero crime, on a quiet side street in a nice neighborhood etc... etc...

Honestly... It may have been an overzealous charitable donation van, or someone assuming we were putting out trash, because I can't imagine someone just pulling up a van to grab all that. It just wouldn't look like it was worth much, and it would have been a fair bit of effort to move it.

And... I just have to laugh at the ridiculousness of it all... Just... Wow.