Thursday, March 31, 2016

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.


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 and here's the gofundme link:

Surgery and SOS

Remember what I said about having a world-famous surgeon and being a "local" to said surgeon? That it puts you at the top of the cancellation list?

Well... surgical consult is April 6th and surgery is... April 7th. At Massachusetts General.

We are SO not prepared. But we're going to get it done anyway.

We're not ready when it comes to the house, or the transportation, or the financials... but we're going to do it anyway.

The surgery Chris will be going through is called a neck dissection. Essentially the neck is opened up and all of the offending lymph nodes (plus one set of lymph nodes beyond) are removed. Do NOT google unless you have a strong stomach.

The recovery will be what you'd expect from having your neck cut into, pulled apart, and sewn back together. Inability to use neck muscles. Inability to eat solid food. Inability to make sudden movements. Plus the threat of neck lymphedema (backup of lymph fluid causing swelling in the area). Since Chris already has neck lymphedema it's going to be a problem.

So... with limited ability to use his neck muscles, a necessary avoidance of sudden movement, and a need to stay upright, it's not exactly going to be life as normal here.

What we need:

  • A recliner, to keep him upright and supported, as well as comfortable.
  • Another bed, so I can sleep somewhere other than with him.
  • Transportation to and from Mass General, for the consult, surgery, discharge, and visiting him while he's in the hospital for the 2 - 7 days necessary. We're almost certainly going to need a rental car.
  • Cash to pay the bills. We are still short on rent and other bills, and food money will be an issue soon.
We really, really need your help. Anything you can give would be greatly appreciated. If you can't give please share this. It's not just about keeping Chris alive, it's also about making sure our 3 year old has a father. If you know anything about our 3 year old you know just how important keeping his dad around will be.

Any help you can give would get us closer to Chris surviving and our lives going back to normal.

I still have a GoFundMe set up, and PayPal to always works.

Thank you,


Sunday, March 27, 2016

One Hundred Years Beyond the Rising

100 Easters past, the morning of Easter Monday 1916; with these words, read on the steps of the General Post Office...Padraig Pearse, proclaimed the free and independent Irish Republic:

...We declare the right of the people of Ireland to the ownership of Ireland, and to the unfettered control of Irish destinies, to be sovereign and indefeasible. 

The long usurpation of that right by a foreign people and government has not extinguished the right, nor can it ever be extinguished except by the destruction of the Irish people. 
In every generation the Irish people have asserted their right to national freedom and sovereignty; six times during the past three hundred years they have asserted it in arms.
Standing on that fundamental right and again asserting it in arms in the face of the world, we hereby proclaim the Irish Republic as a Sovereign Independent State.  And we pledge our lives and the lives of our comrades-in-arms to the cause of its freedom, of its welfare, and of its exaltation among the nations... 
... Signed on behalf of the Provisional Government, 
Thomas J, Clarke
Sean Mac Diarmada
Thomas MacDonagh
P.H. Pearse
Eamonn Ceannt
James Connolly
Joseph Plunkett
That day, elements of the Irish Republican Brotherhood, the Irish Volunteers, and the Irish Citizens Army, took control of various sites around Dublin.

They fought the forces of the British Army and Royal Irish Constabulary... 1,250 men, fighting 17,000... for five days, before being forced to surrender the following Saturday.

66 of the rebels were killed, to 143 of the British... but 260 men, women, and children were killed in the crossfire, most by British artillery and machine guns... Not intentional murder.. but rebellion is bloody business, and in the fog of war, innocent people die.

The day of the rising, the British declared martial law over all of Ireland... It would remain in force off and on for the next five years.

Within two weeks of the surrender, hundreds were imprisoned, and 16 of the republicans (including all of those who signed the proclamation) were executed by hanging, in Kilmainham Gaol...

... The same prison where the British had imprisoned and executed the leaders of the risings of 1798, 1803, 1848, and 1867...

The fighting would continue sporadically until 1919, when all Ireland entered into general civil war for two years; until 26 counties formed the Irish Free state under the Anglo-Irish treaty: December 6th, 1921... and adopted the Constitution of the Irish Free State one year later, December 6th 1922.

Ireland would not be truly free and independent... remaining as a dominion of the British Commonwealth... until December 29th, 1937, with the adoption of Irish Constitution.

Even then, Ireland still officially recognized dominion of the English crown as head of state, until Easter Monday 1949, when the Republic of Ireland was officially declared...

...33 years from the Easter Rising.

Getting closer (Chris's cancer update)

Happy Easter everyone.

Here's a progress report for you.

Chris's surgical consult is now on the 7th. His surgery may be any point after that date, hopefully soon. But since we're "local" (to a world-famous surgeon, anyone within driving distance is local) and it's time sensitive, he's at the top of the cancellation list.

Yeah, we're counting down the days.

After the surgical consult happens Chris will be further reducing his iodine intake in preparation for radiation. Either Christopher and I will need to go on the same diet and shell out for ridiculously strong iodine supplements or... well, realistically speaking we should probably still shell out for the strong iodine supplements.

We still don't have transportation, and while it's easy for me to get a ride to the grocery store, getting a ride to downtown Boston for a 9am appointment on a weekday is a little more difficult. We'll figure something out, but I may need to get a rental car.

The bills are piling up. We're short on rent for the month, plus we need to take care of tiny bills like the electric and the phones. Yaknow, the non-discretionary stuff.

... and it's Christopher's 3rd birthday tomorrow, and we're broke after paying medical and other bills. So we'll delay his birthday a bit.

But we're getting somewhere, slowly but surely.

Much thanks to everyone who has donated so far. Because of you the lights are still on, there's still a roof over our heads, we still have internet, the medical bills and insurance are paid, and we're able to eat.

We've still got a long ways to go though, and as I mentioned above, rent and other bills are still an issue this month.

I've still got the GoFundMe up and running, and PayPal to always works. Any help would be highly appreciated.


Monday, March 21, 2016

Not the best... not the brightest... just the ones who showed up...

So, are these presidential candidates the best that America can do?

No, of course not...

These are just the "best" that were actually stupid or crazy or narcissistic or power hungry enough to want the job, and then put up with the process of getting it.

The last time "the best that America can do" ran for President, his name was Thomas Jefferson.

The best that America can do... don't go into politics. They go into finance, and medicine, and engineering, and construction and development, and the actual moneymaking side of the legal profession, and they build businesses, and they do good works on their own initiative... They don't wait for government to do it.

The best that America can do serve... but they do it as cops, firemen, paramedics, soldiers, sailors, airmen, coastguardsmen, and marines.

The best that America can do, know that America isn't our politicians, and it isn't our government... It's each of us, doing our best for ourselves, our families,our brothers in arms, our companies, our communities...

... And the best that America can do... Don't want to have anything to do, with most of people we send to our capitols, and most of the "business" that gets done there... But they have to, because if they don't, then the people in those capitols won't let them do the best that they can do...

Don't ever confuse our government, or our politicians, with the best that America can do... with our actual leaders... with our communities... with the nation...

They're just the ones who wanted the job so bad they'd put up with anything to get it...

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...

Friday, March 11, 2016

The situation right now (Chris's cancer update)

Some good news this week: CT scans of upper chest showed no masses or enlarged lymph nodes. The cancer has not spread past the neck.

Still Stage IV, but a much more survivable Stage IV.

Chris has a pre-surgical consult set up with one of the best endocrine surgeons in the world on April 13th, at the latest. He's also at the top of the cancellation list. His endo was mentored by the surgeon in question, so we have a direct line to getting this done.

So as soon as possible Chris is having a full neck dissection (do NOT Google that unless you can handle graphic pictures of surgeries). Then he'll have a little time to recover before a dose of I-131 (systemic radiation using radioactive iodine).

So we're talking at least a few months of Chris being completely down between the surgery and the radiation.

Now the bad news...

Chris is already down and mostly bed-bound. His lymphedema and lymphadenitis is pretty severe. His lymph fluid is backing up into his upper chest and back and is quite painful. It keeps him from sleeping as well as worsening his knee problems.

You can't really tell if you follow him on Facebook because he's already so used to being in pain. However, that means that if it involves walking, I'm the one doing it. Also because when he finally gets to sleep he needs to stay asleep, I'm handling most of the communications with the medical team.

So I'm running the household, taking care of all 5 living creatures (Chris, Christopher, doggies, and myself), and handling the medical stuff essentially single-handedly.

I'm happy to do it, since I really want my husband to live, but it's damn hard sometimes.

Chris can't work because he's totally unreliable at the moment, between pain, sleep deprivation, and the medical stuff coming up.

I can't work because if I work Christopher needs to go into daycare, and there's a high cost there. There's also the very large issue of if I'm working and Christopher goes to daycare, we risk bringing home stray viruses to Chris while he's immunocompromised. A random virus could literally KILL him right now.

So at a time where our medical costs are climbing ever higher, neither of us can work. Isn't that a kick in the head?

So yeah, we'll be hurting for a while, and we'll still need help until Chris is well enough to work again or handle child care.

But hey, we're getting somewhere and his chances of survival are very good.

I've still got the GoFundMe up and running, and PayPal to always works. Any help would be highly appreciated.


Thursday, March 10, 2016

Trump Must be Held Accountable for the Bad Actions of His Campaign

This past Tuesday, Donald Trumps campaign manager Corey Lewandowski assaulted a reporter at a press event with Trump... fact right in front of him... Then he walked Trump out of the room right over the woman he knocked to the ground.
He not only physically assaulted a reporter...
...a FRIENDLY reporter no less... for asking a question he didn't like...
...An assault which was caught on audio tape, as well as witnessed, verified, attested to, and already been written about by other reporters who witnessed it...
...But for the last two days, he has directed the Trump campaigns full resources, first to deny the assault ever occurred.. but, far worse... To  attempt to discredit,  defame the character and professional reputation of, and to otherwise ruin... to destroy professionally and personally... the reporter in question.
To this end, they have made baseless accusations of fraud, professional and personal misconduct, and attention seeking. They have also had their proxies attack her relentlessly online; resorting to vile sexual innuendo, and bald faced misogyny.
Lewandowski did not do this alone... the whole campaign was directed towards trying to destroy this woman, with the full knowledge and support of Donald Trump himself.
These are not the actions of an responsible, honorable, or even sane man.
A responsible man wouldn't have done it in the first place... And were Trump a responsible man, he would have stopped, helped the woman up, apologized, and made sure his man apologized.
An honorable man would have immediately admitted fault, and apologized... and were Trump an honorable man, he would have done so, and ensured his man did so.
Even just a sane man, would have immediately made a reasonable face saving excuse, and a small and quiet apology for the "accident"... a trivial gesture to avoid trouble, as well as just the proper thing to do.
Instead, when caught and confronted with proof... these men spent two days trying to destroy the person they assaulted.
These are not the actions of sane men.
They are the actions of raving malignant narcissists, who must destroy anyone they have wronged, rather than admit even the slightest error, fault, blame, or weakness.
These are not the actions of anyone we should ever even think of allowing, anywhere near the power of the office of President... Or any kind of position of trust or responsibility.
These are men who will do anything... say anything... destroy anything... in their pursuit of power.
If Trump and his people are willing to go all out in trying to destroy a reporter, to avoid admitting a relatively small mistake, and making a trivial apology... What would they do if they made a major mistake... if people died... What could possibly be beyond limits to them?
Lewandowski, and Trump stand equally guilty, and equally responsible. If Trump had apologized or fired him Tuesday, or Yesterday, or today... If he hadn't allowed the smear campaign to happen...he could perhaps distance himself from it... Instead, he chose instead to put his full support into trying to destroy the woman.
And now... they both must face the consequences.
Lewandowski must be terminated immediately, expelled from the Republican party, and barred from participating any Republican party campaign; as must anyone in the Trump campaign, who participated in the attempt to destroy this reporter.
Trump must admit his staff and campaigns bad actions immediately, take full personal responsibility, and apologize personally to the reporter; as well as to the witnesses to the event, their media organizations, and most importantly to the American people.
If he does not, then he must be censured by the party, barred from participating in any Republican party events or activities, and from campaigning as a Republican, or for any Republican position or nomination; until such time as he takes responsibility and makes his public apologies.
If he refuses to admit any responsibility or fault, and does not apologize at all... or worse, the campaign continues these attacks in any way... he must be expelled from the party, and removed from any consideration for nomination for any elective position as a Republican candidate.
This is no longer about a campaign manager being too pushy... This is about the integrity of the American political process; the honor, integrity, and legitimacy of the Republican party; and our honor and legitimacy as a nation.
We cannot allow someone who would do such a thing to represent us, in any way, ever.
We are better than this.

Update: A video has surfaced clearly showing the assault, and Corey Lewandowski has been arrested on charges of Battery, but the Trump campaign has doubled down; now instead of claiming that it didn't happen, that instead, Lewandowski was protecting Trump from assault by Fields. 

Saturday, March 05, 2016

Update on Chris

Chris is really, really sick.

If you see him on Facebook that might not be clear. He still rants and argues with the best of them.

However he's exhausted all of the time and sleep in elusive because of his pain level. His pain level was high to begin with; lymphedema makes it much worse.

He's also pretty much housebound because of immunodeficiency. Actually mostly bed bound. Most of the time when he's asleep it's during the day when Christopher and I are up.

Yeah. it's a pretty unhappy situation,

Because of the weird schedules and the pain I've become the default contact for the doctors and nurses, as well as handling everything inside the household, everything outside of the household, and of course child care.

It's a very high stress situation.

But we're going to work through it. We're in contact with the endocrinologist AND the surgeon (ever call the main number for a world-renowned surgeon and actually get the surgeon? I have.) Things are moving along.

We're still short some pretty necessary stuff, like access to a vehicle that's not an ungodly expensive rental and a lack of furniture for the basement for Chris's isolation. We'll get there too.

Thank you for all of your support. We'll still need more but we appreciate how quickly you guys have been able to prop up our finances.

Unfortunately we're nowhere near our goal yet, so I must keep asking for help.

I've got a GoFundMe set up, and PayPal using always works too.

Thanks all,