This blog started out as a chronicle of my son's fight with neuroblastoma cancer. Fortunately he has been doing so well that there has been less and less to chronicle regarding this disease. I have decided to expand this blog such that it will cover all of my family. Don't worry though, the information passed will still be filtered by my rather large, impressive, and completely insane brain. So grab some pancakes, and buckle up.

Tuesday, February 9, 2016

Reminiscing

Thursday marks 5 years since the first chemo treatment for Cole.  Not surprisingly, this week I have been thinking a lot about when Cole was first diagnosed.  It's kind of funny the things that I remember so clearly after all this time an after all these treatments and after all of everything.  
I remember the first room at Kaiser (room 4), and how it and a little antechamber connected to it.  
I remember the magic hidden toilet in the PICU.  
I remember Nurse Level 2.  
I remember Elisa and Julia forcing me to leave the hospital to go take a nap at the hotel.  
I remember standing outside Room 4 and watching my sister walk down the hallway, thinking at the time that it seemed such a far walk.  
I remember the anticlimactic conversation with Cole wherein I told him that he had Cancer.  
I remember (and this is a strange one) sitting in that little room listening to Dr. Taggart tell me the diagnosis and wondering if, due to her ears, she was a half-elf.  
I remember giving Cole a bath and thinking that he looked like he had been in a concentration camp.
I remember a thousand million other small shitty details that I wish I could unremember.
I remember fentretonide.
I remember the irony of oral zofran.
I remember mint ice cream.
I remember visits to the ER.
I remember him falling at the park prior to diagnosis.
I remember yelling at him to walk right, not knowing the bone marrow in his hips was essentially melting.
I remember finding a time machine being carelessly left unattended.
I remember taking the time machine to the future and finding out that they had cured cancer.
I remember taking that knowledge back to February 2011 and nipping this shit in the bud.

Friday, January 29, 2016

Is the Is the Is or Not?

So anyways like I was saying....

When I am standing here beside myself thinking all the thinks I can think I am forced to think the think that is who is the is that is me?  Am I Michael Clark Duncan or am I Anna Paquin?  Now normally I am content with accepting that the is that is me is the is that currently is and that is can, and does, change to a new is as is necessary.  However when the requirements of the current is require the is that truly is is the is that is the current is then the question of which is is the is that is the is, truly.  More to come on that later.

The above notwithstanding, my current is is contemplating the difference between New York and California.  In New York they play the US Open Tennis tournament.  This tournament is played on a hard court.  Both the benefit and downside of playing on a hard surface is that the game is sped up a great deal.  What if my is chooses to play on this hard surface and it proves to be too fast?  What if I lose control of the game?  Now I am very used to playing on the clay surface of the SF Tennis courts, but at some point you need to go play somewhere else.  Thoughts?

Baseball x2, Cooking x2, Music, Chess, School x 2.5, Coding, Work x1.75, Portland, Seattle, Tucson, Mt. Cross, Okizu, Wizbots, XXX-, US Open?, Clay Courts?  What's a midwest girl to do?

One of the great things about the ever-shifting is that is the ism of the is that is my is is that the current is is always the right is at the time as the is is defined by what is asked of the is currently.  However when the tables get turned and the situation must be defined by the is and not the other way around, which is is the right is?  How do you choose?

Jaime has small ears.

Which is betterer? Blue Bloods or Law & Order?  Answer is Blue Bloods cuz Whalbergs and I like hamburgers.

If you are confused blame Tito, or is it Tita......ok fine blame M&D.

I have a new dog and he ate my chickens.  I think revenge is in order.  As soon as he gets some chickens I will eat them.

I might be drunk.

Or I might not.

Seriously, which is is the is that is the right is for the is that is needed?  I is not able to know.

Raise your glasses and toast Cole, the ball boy at either the US Open or the SF Open.

Thursday, June 11, 2015

tHIS bLOG sTILL eXISTS?

Math time.  Cole recently played 4 baseball games in 4 days.  During those 4 games his batting average was .000, but his on base percentage was .900.  That has to be a record.

Business time.  In a couple of weeks, Baker BBQ sauce will make its official California debut.  If you want to place an order, email me.  If you try to order by commenting on this post, you will likely starve (see Admission time infra).

Awesome kid time.  Ollie is in full blown awesome 3 year old world (full blown awesome 3 year old world is the clinical definition of insanity).  He is well aware of his penis.  He knows that his butt, and the things that come out if it, are both funny and torment his mother.  His command of the English language makes me fall on the floor.

Admission time.  Today I was checking to make sure the interweb was still working by going to my blog’s website.  Did you know that the comments were activated and that I can look at them and see what people have said?  You did?  Well you don’t need to brag about it, because I did not.  So if you commented and I did not respond, please accept my (I would say humble but I don’t think that anyone would buy that) apologies.  In the future I will strive to intentionally not respond to comments so that you can rest assured that my not responding was not due to some oversight.  There.  I feel much better now.

Medical Time.  Cole had been doing a treatment that involved chemo (Chemo is kind of like Saved by the Bell.  You got me through some tough times in my life, but you basically suck the soul.) and some experimental liquid medicine whose properties are kind of magical and if you try and figure out what is in it you run the risk of being banished to the ice penal (heheh I said penal) colony on Zortof, the 3rd moon of the planet Zoroastical.  The treatments were successful in the same way that most of the treatments have been successful.  Cole is not dead.  His cancer has not spread, and Cole could tolerate the med. (read the last two sentences out loud for an added experience).  This is the same treatment that I last described way back in November.  The chemo portion caused his hair to fall out, and caused him to miss one week of school every three weeks (and still got an award for reading more words that all the other kids in the world combined).  We did like 15 or 16 rounds of this treatment.  The result?  A tie.  I know a tie is a win in this game, but I want a F$#@#$$ing full on hoist the trophy win.  Now we are on to a new treatment.  This one, assuming it works, is totes awesome.  The therapy is immuno based therapy.  In this instance the medicine goes in and provides a pep talk similar to the one I gave to the soccer team (see other posts either supra or infra depending on how your browser organizes the blog) to the white blood cells.  Of course the result is the final determination of the awesomeness, or lack thereof, but this treatment already has a high level of awesome because there is no chemo component to it.  That means that if you get a rare look at Cole’s head, sans hat, you will see a darkening that is not because the hat is totally gross and dirty (which it is), but because he is getting fuzzy up there.  Imaging this week after our first full cycle of this treatment.  Stay tuned.

Admission time.  Again.  I am not wearing pants.

Question of the day.  Why is it ok for girls to wear spandex type pants around town but when I do it, suddenly I am that weird guy who makes people uncomfortable?  That is cultural gender discrimination and I will not stand for it.


Drink Time.  Raise your glasses and drink to Cole, who may or may not join the Blue Man Group as an intern this summer.

Thursday, November 13, 2014

Beware of Greeks and Naked Messy Dudes

Last night Norma Rae was off rabble rousing, so the boys and I had a good old fashioned boys’ night.  A fort was made.  A fort was destroyed.  A fort was rebuilt.  A fort was redestroyed.  A fort was rerebuilt.  A fort was reredestroyed.  A fight ensued.  Peace was installed.  Milk was consumed.  A fort was abandoned to the savages.  A fuse was blown.  A child cooked a protein.  Things were deep fried in oil.  Condiments were overused.  Messes were made.  A good night was had by all.

Then reality sunk in. Cole started feeling shitty (In case you have not been keeping track, this is a treatment week).  As it was early and I was too tired….I mean since I value art so much…. I let the boys tear into the play dough. 

Logan made a dude.  I know it was a dude because it had some stuff that only has a dude has.  And it had butt cheeks too. (here it is appropriate to say that boys rule.  Girls drool). 

Oliver made a mess.

Cole made a little figure, and a toilet.  The figure had food (real food mind you) in the mouth and there was food in the toilet.  I asked him what he made and this is what he told me, “Well Dad, when the Greeks would get sick or hurt, they would make a figure that showed the sickness or hurt.  They would put it in their house and the hurt would go away.”  Umm.  Ok, little man you are nine.  You have not (yet) graduated from Stanford so you should not have such sophisticated thoughts.  But you do, and you are awesome. #buybakingsoda


Next imaging is week of Thanksgiving.  I think that someone should buy me (by me of course I mean Cole but since he is a child I will have to go with him) some tickets to the Seattle-SF Thanksgiving game.   

Tuesday, November 4, 2014

Please come wet your toes in the pool of insanity with me

You may be wondering why my last few posts have been about the awesomeness of sports.  Well, first of all it is because sports are awesome and anyone who disagrees is a big banananananana head.  Second it is because of October. 

For those who are not sports peeps, October is the best month for sports.  Hard core basketball dudes will say I am wrong and that either March (college) or June (NBA) is the best.  Followers of fine football will be fuming, and fabricate fibs that January/February is the best.  Hockey….I just can’t seriously discuss hockey (don’t worry, they are all Canadadaaddaddaians who will cheerfully still be nice to me even though I trash their game). 

The reason October is the best is because baseball is winding down, with the ultimate culmination occurring with the World Series; football is just getting into its groove where games really start to matter; and basketball is just starting.  Every aspect of sport can be seen, experienced, cherished, blah blah blah all in one month.  It rocks.

Today’s discussion from the world of sports is the idea of excellence vs. greatness.  First some definitions.

Excellence: The grown up word for doing it the best.  People like to see excellence.  The best example of excellence is the San Antonio Spurs.  Watching them play reminds me of doing a very specific drill to learn how to run an offense.  In this drill, the offense would run its plays, or sets, or whatever it was supposed to do without any defensive players on the court.  You just worked on going to the right spots, making the right passes, getting the good shots.  Then doing it again until you can run the offense in your sleep.  That is the Spurs.  It is like the defense is not even there.  They just do their thing, and make it look easy.  That is excellence. 

Greatness: The grown up word for Legen------------(if swung that way I would totally be into to NPH)------dary.  Greatness is like porn.  Hard to define but you know it when you see it (thank you Supreme Court for helping with my analogy).  Greatness causes people to lose their minds (in the good way, not the need a lobotomy way).  The San Francisco Giants are a great example of this.  This is a baseball team that is not really all that good.  They have a few good players (for the locals who are fuming at my only referring to the better players as good, look at Mad Bum’s stats in the regular season.  Good, not great), a really good manager, and a good front office.  But something happens to them if they somehow find themselves playing in October.  They become magic.  Maybe that is what greatness really is.  When someone(s) transforms themselves, and/or performs in such a way that can only be described as magic. That is greatness.

People who strive for, and succeed at, excellence see the universe of rules that governs their world.  They know the goal.  They have a plan.  They execute the plan.  They achieve the goal, and they do it better (in whatever way better is defined within that world) than everyone else.  Excellence is doing it the right way perfectly.

People who achieve greatness look at the rules of the specific universe and gafaw (in order to truly understand a gafaw, imagine a man standing in the face of a hurricane that is throwing hot lava.  As the fit hits the shan, the man leans his head back and lets out a booming sound from deep down in the cockles of the soul.  The sound is a cross between a laugh and a threat.).  They toss the rules aside and proceed to achieve the goal in a way that no one has ever heard of before.  If excellence is doing it the right way, then greatness is creating the right way.  Most attempters of greatness go mad.  Those ones that don’t, become legends.

Which do you want to be, excellent or great?

On the day of my wedding, a certain coach for whom I have great respect (despite the fact that he broke the rule.  The one rule.  There was only one, and it was broken and only I picked up on it and I won’t tell anyone what it was except for a certain other person who played a sport for which I have absolutely no respect but he/she/it is sworn to secrecy and you can tell how important this sentence is because I am not degrading it with any CJ punctuation or any of that cuz I am lazy #youth(wow that was a cool rant that had inside rants from no less than 3 of my different worlds in which I live))()()()(j)(u)(s)(t)(b)(e)(c)(a)(u)(s)(e) wished excellence upon my marriage.  That wish always felt just a little bit off to me.  It is like wearing a shirt that is just 1/6 of a size too small.  For the most part it fits, but is just ever so slightly off.  I think that my offness stemmed from the fact that I have absolutely no desire for excellence.  Really.  I am being serious here.  If I ever end up excellent at anything, it was not intentional and I apologize.  What I want, what I desire, what I yearn for is greatness.  I have not achieved it yet….then again maybe I have.  Or maybe i’VE already gone mad.  I will let my autobiographer decide if he ever gets around to actually writing the book.

When I look at Cole and Logan (Ollie is a little t0o young for me to determine how his life is going to go.  As a general rule I like to let kids have 5-6 years of carefree happiness before I decide who they are, and who they will be), I see one kid who will undoubtedly be great, and one who will surely be excellent.  I am enjoying watching them play it out.

Fine, an update on boring medical stuff.  Cole is doing well.  Hair is funky.  Labs are good.  This week we actually have a rare week where not one single medicine is required for an entire 5 days.  Pretty cool.  Next week we start another round of treatment, but in the meantime raise your glasses and take a quick drink cuz they are watching you. (Side note: The best part of my blogging experience is letting my computer try to spell check my post.  I did not know that computers could sigh in exasperation, but come to find out they can.)




Wednesday, October 29, 2014

Torrent River of Swirling Thoughts

Number 1:
So like I was saying, everyone around here was watching it.  Everyone within 100 miles of KC was watching it.  27 other people were watching it.  If you are one of the aforementioned individuals, this post is not for you.  If you are one of the chosen from the last post, then this post is not for you (but you will appreciate it). 

Music is the only field, other than sports, where 50,000 people will go out of their minds crazy just to watch you do your job.  But here is why sports is better.  In music there is no chance of losing.  NKOTB never goes out on stage and has to worry about 98◦ out playing them.  There is no agony in watching Green Day work all year long, playing concert after concert only to lose out to JayZ.  That is not to say that music is in any way bad.  In fact anytime 50K peeps will act like maniacs because you walk around, it is cool, but still, sports wins.  Go find your sport and start playing.

Number 2:
I just started the Slow Regard of Silent Things.  I highly recommend that you read this, but you must follow Pat’s advice and neither buy it nor read it unless you are supposed to, and unless it is right.  His first two books are awesome and fantastic and super cool.  This one is simply beautiful

Number 3:
Do you like this new format?

Number 4:
I just had a great idea.  Chemo Christmas.  This is a new holiday that will be celebrated in February.  Here is how it works.  On Chemo Christmas, you celebrate the magic of western medicine’s ability to figure out that they can make stuff that will kill the bad parts faster than the good parts.  You celebrate this by giving a gift to someone who’s life has been affected by chemotherapy.  The gift does not need to be, and should not be, big or expensive.  It should just be something to say, “I am glad that because of chemotherapy you are here to receive this gift.”  The gift is not really for the patient, but for the collective intelligence and spirit of every doctor, scientist, nurse, and patient who has ever been involved in cancer research.  This new holiday will be celebrated on the first day after the tenth day of the second month of the year.

Number 5:
I have been working on a train of thought regarding the difference between excellence and greatness.  That will be in a future post.

Number 6: 
Tonight pour a drink and raise your glasses for Cole, the first of the three most awesome dudes ever.





Saturday, October 18, 2014

Sports

I have been instructed by my therapist to start blogging again.  Apparently I have been kind of an ass lately....wait....hold on....it's coming............I am always kind of an ass (or a kind of ass, or a kind ass, or one of the asskind (a race of grammarain warrariors from the south of france).  Oh well, I am here might as well make the best of it.

Details on Cole to follow, but I would be remiss in my duties as el entrenador grande if I did not first speak to you about some sports stuff.  For those of you who are sports peeps, you already know this so feel free to jump down to the update section.  For those of you who either think sports are dumb, or refuse to let your kids play sports, keep reading.

This morning 7 4th and 5th graders stepped onto the pitch to do battle.  With no subs, this well coached group of mini-warriors fought epically for a half.  la They were like little possessed beasts.  They were flying to the ball.  At one point Cole literally.....literally...flew into an opposing player, who had at least 40 lbs on him, in an attempt to win the ball.  Their efforts paid off, and they jumped out to a 2-0 lead.  As the half wound down, the other team's best player (who will not have to pay for college) dropped a dime from 25 in the upper right corner, and then tapped in a rebound after we made an all star save.

2-2 at halftime.  As the soldiers prepared to finish the game, one comes to me and tells me that hA e has to leave.

The second half starts and we are down a man.  I gather the troops and give them the combination of St. Crispin's Day Speech, Any Given Sunday Speech, and Hooser's (for those sad sad few who don't know this one..."My team is on the field").  A great war cry erupted from the pre-pubescents, and I think that I actually saw fear in the other team's eyes.

The boys played with a fervor that I have not seen since lo these many years.  However, as the game wore on, and the attrition started to set in, the enemy was able to chip away at us.  Exhaustion.

Two goals were scored  late in the second half.  We rallied and got one back, but they were too strong, and we were missing a player, and they tacked on two more at the end.  6-3.

Now here is why this is important.  In the San Mateo AYSO U-10 league, the first five games do not count towards the tournament.  We did not win any of those games.  The last 5 do count.  Last week (a loss) was gave 6.  This week was game 7.  In case you were not paying attention, we have not won a game yet.  Also, in case you were not paying attention, we were down a man for half of the game today.

As the boys walked off the field in defeat today, almost every single one of them had tears in their eyes.  These tears were not just due to losing.  No.  They were the tears that come when you give everything you have to something, and then you give a little more, but you come up short.  Every boy today played his heart out, and I want them to hold their heads up high, but I know that they will not.  Sometimes the dagger thrust of defeat is too deep to heal in one night. So tonight as you go to bed you should know that there are 7 little men that have been wounded deeply today.  Tomorrow they will wake up, and maybe, they will take that pain and use it as a reminder to keep trying, keep fighting, keep going.  They will also know that there are 6 other people to whom they are connected, and with whom they share a bond that goes down to the very soul of their person.  That is why you play sports.

Now on to Cole (I know what you are thinking, why talk about cancer (which sucks) after talking about sport, but it must be done for a few reasons.  1) you want to know 2)Roberta would kill me if I don't and I have about 500 reasons to listen to her and c) it is a better update than the last one).  Cole has been on a new treatment that started right after the last time that we all got together and entered my brain.  It consists of some liquid medicine (which sounds chill but can literally....literally eat through a brand new quartz countertop), "normal" chemo meds ("normal" chem meds?  really, "normal"?  what does that even mean.  Well, I am glad you asked.  "normal" is the grown up word for a drug that is not experimental.), and various other otcs.

So far the treatment has been going well.  Not a victory, but not a loss.  New spots in the leg appear to have been eradicated.  All the old spots are still there, but they are not getting bigger.  In this game, ties are good.