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.

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.





Thursday, May 29, 2014

Poopy Poopy Poopy Pants

There are not many things that I truly hate.  I can usually always find something good…at least good in the way that I look at things which usually involves making someone feel uncomfortable… in anything.  That being said I odviously hate cancer.  A side hatred of the overarching cancer hatred is the hatred of waiting for the next thing. 

For those of you that are lost, let me splain.  Cole had been taking part in a treatment that consisted of him taking pills every day that did not seem to have any sort of side effects.    Unfortunately they also did not seem to have any sort of cancer fighting effect.  The spots that were there are still there, and he has a new spot in his right leg.  So now we are back into the hair falling out, feeling like shit, upset stomach, sleepless nights (and the side effects on Cole suck too) chemotherapy treatments that we all love so dearly.

So tomorrow, well since it is well past one am today I guess, Cole has to go in to the OR and get a port put in (I do hope they put it on his right side for ironicality).  A port is just like the central line that he used to have, but the access point to this line lives under the skin.  Good for us because there is no maintenance and no water restrictions on Cole, who incidentally, has become quite the swimmer.   

This port installation procedure is a fairly minor (relatively speaking) procedure, and I am sure that Doc Sullivan will have no problems.  Of course my wildly overactive imagination has gone through all of the shittiest possibilities and has decided to share them with the part of my brain that deals with me going to sleep.  I have been sitting here imagining having to write his obituary (which I have done more times that I care to admit), imagine the doctor coming into the waiting room to apologize because there was nothing they could do.  Super fun times. 

Switching gears a little bit….that is what I do and how I roll.  Deal with it…., I had a telephone meeting with a nurse practitioner in advance of the surgery….at least that is what he said that it was.  Given his almost comically (without the almost) clich├ęd accent, and the fact that he kept saying, “According to computer” (now put that line into an over the top Russian accent that sounds like a guy making fun of Russian accents, and you will see the comedy), and the fact that he is from Kaiser, which is where Cole was born, and the fact that he kept asking about Elisa’s pregnancy, and the fact that 2+2=4, I have decided that he is a sleeper agent from the former Soviet Union that was accidently activated when I ordered a pizza online the other day.

This new therapy will require Cole to spend 4 hours per day, M-F, one week out of 3 (sounds like the worst Reserves commercial ever) up at sunny UCSF (when the new one opens I wonder if the proximity to the ball park will result in more games attended.) for the foreseeable future.  Word around the campfire is that we are of the mindset of long term systemic treatment instead of maintenance. 

Looking for ideas on things to do while we are in.  The therapy is all done outpatient so we can’t bring the big bag of stuff (big bag of stuff means the D&D stuff, Wii, Dr. Pepper, Pringles, and Goldfish).  Odviouslylenss we will do some world domination plotting (Will send you the link to our World Domination Kickstarter.  We only have to raise 2345w3sfw34545342 more dollars), but we need some other ideas of what to do that does not equal video games.

Think I will say bye for now, but please remember to give me ideas that are not the normal ideas (do a puzzle, paint a picture, get some stank).  Think outside the box.  I look forward to your comments, but please be advised that all comments must be written between the hours of 12am-4am PST (or is it PTSD) or written after 12-14 beers have been consumed within the previous 1 minute.  Please raise your glasses to Cole, author of a beloved series of children’s book starring a shy palm tree named Guido.



Wednesday, March 19, 2014

100 is a cool number

Do you think that I look like Busta Rhymes?  Maybe just a little bit?

I was thinking about making a big deal about the fact that this is my 100st(th)(rd) post, but then I decided that the round, base 10 numbers get all the play so I am going to celebrate some lonely prime number.

You that super awesome feeling that you experienced as a kid on Christmas eve?  Lying there in bed, quivering with excitement knowing that at any moment a very large (for those of you who were kids before Coke made him fat, feel free to remember him as a small elf) possibly drunk (given the flushed cheeks) would be performing a home invasion at your house.  What you got did not really matter.  All that mattered was that you were getting stuff.  Every sound that you heard had to be Santa.  You knew that if you could only go to sleep Christmas would get here.

So this week is imaging week.  The anticipation that I feel is the exact opposite of the Christmas Eve feeling.  I kind of don’t want imaging day to come.  If it never comes, then I don’t have to have that conversation with Dr. Taggart about new spots and new treatments.  I don’t have to tell Cole that he can’t play sports this week, or that we have to start a new treatment that will involve some stupid side effects. 

This means that when you ask me how it’s going, I will say to you, “good good (don’t know why I always speakly doubly thus, but verily I doth)” but now you will know that inside I will be doing the crazy dance of crazy.  (Think Madonna, Madonna, Martha Graham, Martha Graham).

For those of you who don’t speak Jim very well, we have imaging (MRI, MIBG, CT, EIEIO) this week.  Today was MIBG injection and MRI.  Tomorrow is MIBG and CT.  This will tell us what, if any, effect this new treatment has been having.

Now on to much cooler stuff.  The best little town in America (San Bruno) is kicking off their Relay for Life Run that is coming up this April with a great community event this Saturday.  In the spirit of Batkid, two local kids will be battling an evil super villain all across the city.  The battle will be followed by a BBQ.  The whole purpose behind this event is to honor and celebrate those who have fought and won the battle against cancer.  It is also to let those that are still fighting know that they have friends and loved ones out there who are ready and willing to help. 


This event is taking place this coming Saturday.  Send me an email, comment on this blog, or facebook me if you are interested in more details.  For now; however, raise your glasses and toast Cole, superhero.


Sunday, February 23, 2014

I am a 99er

So I have a couple of things on my mind today.  The first, in no particular order, is prayer.  Now I must first say that I am not making judgments as to whether or not you should pray.  Nor am I saying that any one faith, or lack thereof, is better or worse than any other.  But today I was sitting in church and listening to the people pray for those that they loved.  I began to think about the studies that I have seen that suggest that patients who, without their knowledge, are prayed for by strangers have a higher rate of recovery than those that don’t.

So here is my question/problem.  If we take it as a given that prayer works, then that kind of means that the absence of prayer is detrimental.  It also means that the deity to whom the prayer is directed is less likely to intervene in the absence of the prayer.  So it is really just a popularity contest.  That all being said, I know that a bunch of you have been praying for him, and you know the results to date, so keep it up…and tell your friends.

Second.  I may have written about this before, but since I never go back and re-read my prior posts, I can’t be certain.  Now I know that we are winning.  I know that he is doing great.  I know that he is making long term plans to start an origami basketball league.  I know all this with the thinking part of my brain that is in control when the lights are on.  When the lights go out and the demons come; however, it is a different story.  For some reason when I go into that dark place I write, and re-write his obituary. It is scary and depressing and I don’t like it.  But as Big Dan used to always tell me.  This shit will end.  The sun will come up tomorrow.  It’s all good.  #true (btw I think that I have a sufficient misunderstanding of the #hashtag thing to start using it on a parenthetical scale))))))))))))))))))))))))))))))))))))))

Third, there are too many people that have done so much for us that I could just write a blog called “Thank You” and I don’t really want to exclude anyone or place anyone’s help above anyone else’s so I rarely give too many shout outs on this blog.  I prefer to thank you personally.  Tonight; however, I do want to say thank you to Holy Trinity Lutheran Church for what you have done for us recently.  No need to go into details, but please know that we thank you from the bottomless basket of our hearts.

Today marks the official last day of cycle 1 of Cole’s treatment.  Tomorrow he and I brave the urban savages and invade the UCSF PCRC LMNOP EIEIO.  We will be well provisioned and well prepared, and will kick some Cancer ass.  Blah Blah Blah.  That is not important stuff.

What is way more important is that THEY ARE COMING.  I repeat THEY ARE COMING.  If you know who THEY are, you should be excited.  If you don’t you should be even more excited.  Again, in case you have really bad short term memory (remember that great SNL skit with Tom Hanks, Mr. Short Term Memory?  “Who put this wallet in my pocket.  It belongs to someone named Tom.”  “You are Tom.”  “I am now.”  Great stuff), THEY ARE COMING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Until they do, raise your glasses and toast Cole, Commissioner of the OBL.

Sunday, February 16, 2014

[Enter Title Here]

My sophomore year in high school I went to a high flautin’ snobby type school that had the word preparatory in it.  It was so snobby that when I rolled in I was looked at like that guy from the Mummy in that movie about a jewish kid playing football (20 points to the first person who comments with the name of the movie).  In my English class we were given a heavy dose of poetry.  Not the cool Carpe Diem stuff, but long stuffy poems full of made up symbolism.  Despite that, I was lured into believing that I should love poetry. I have read a bunch of it now, and have really tried to like poetry, but come to find out, I don’t.  I don’t think less of you if you do.  I just really hate it.  And I am ok with dat.

On the other hand (which according to a certain dirty anthropology professor who taught me that a baboon has an actual bone for his bone, is not allowable if one does not first say “on one hand”), I am very upset that I have been completely unable to love comic books.  I really want to.  They have cool art, they are full of double entendreeses, healthy amount of cleavage, super heroes, etc.  I just can’t bridge the gap between picture and word.  It sucks because my inability to get into comics makes me feel like a poser when I watch Comic Book Men.


So we have completed the first cycle of the taking of the medicine.  Now we have one week off before starting cycle 2.  Thus far the side effects have been minimal.  The only bummer so far has been a drop in platelets which precluded Cole from playing basketball this weekend.   


Jim Baker is fighting for justice.  Jim Baker is pissing in the wind.  Jim Baker is trying to recover after eating durian fruit ice cream.  Jim Baker is setting up campaign contribution funds for Cole and Logan's Presidential Campaigns.  Jim Baker is trying to keep the economy alive by redistributing funds from bad guys to good guys.  Jim Baker just finished brining a turkey.  Jim Baker is happy Logan has his first tooth.  

Sunday, February 9, 2014

Brothers

Every day someone either comes to me or to Cole and says what a bad ass he is(or some variation of bad ass.  All I hear is bad ass cuz I have a babel fist in my…I mean babel fish in my ear).  While it is most certainly true, it makes me feel kind of bad for Logan.

Logan already suffers from second child syndrome.  Everything step of his development is compared to his older brother.  Everything he has done has already been done by Cole.  Everything he tries, Cole does better because he is older.  All in all he feels like he is a poorly made carbon copy of everyone’s favorite kid.  I know what it feels like.  I am a second born too.

With all that already happening, now imagine how he feels when everywhere he goes all the adults want to talk about is how Cole is doing, how Cole is feeling, how awesome Cole is.  Sprinkle in a generous amount of Dad (his favorite parent…I got Logan, Cole is a split but leans towards Elisa and Ollie is 100% Elisa) can’t play because he has to spend all day at the hospital with Cole.

That got me to thinking about siblings of cancer patients.  There is a site called supersibs (www.supersibs.org)  that is dedicated to siblings, but that is the only organization that I could find.  So tonight’s BDITWNAH (Big Dream Idea That Will Never Actually Happen) is that I am going to start my own foundation for siblings.

What I would really love to do is to open up a hang out Mecca for kids with cancer.  It would be open to all kids with cancer as well as their siblings and friends.  Video game rooms, pool tables, ping pong tables, basketball gym (with no volleyball lines of course), library, homework help etc.  Basically a YMCA/Boys and Girls Club setup but for kids with cancer.  How cool would that be?  All I really need is a super rich dude to make the first donation to the foundation.  If you know one give me a call.

Many of you are dying to know how Cole’s game went on Saturday.  Sorry to disappoint you, but I can’t talk about it because it is still too raw for me.  All I will say is that Cole had fun and played hard. 

Tomorrow Cole and I venture forth to the UCSF for an 8 hour day of video gaming…I mean doing homework and studying…  Will it be CIV5, Lego Indiana Jones, Narnia??? 


Stay Tuned for the answers, and in the meantime please raise your glasses to Cole, Logan, and Oliver…brothers.