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.

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. 

Wednesday, February 5, 2014

Um.....OK, I guess.

Brain is not following any kind of path tonight (granted my normal paths are convoluted and strange, but they still follow some sort of structure) so we all must suffer through some randomings…

Let me tell you a few things about the number 3.  Get ready for some edumacating
3 is the number of years that Cole has been fighting the Hydra.
3 is 3/10 of the way to 10.
3 is how much younger Logan is than Cole
3 is the number of doctors that have told me that Neuroblastoma is not genetic
3 is the number of doctors that I don’t believe
3 is a magic number according to Jubal Sackett’s injun friend
3 is the number of boys that I have that are still within the age range for Neuroblastoma

On to other things….

I find it amusing (in the strange way that I think) that Cole decided to get diagnosed with Cancer during Cancer awareness month.

If you have any extra money lying around, you should donate it to Make-A-Wish, or if you want to do some local good, I suggest donating to the San Bruno Relay for Life.  http://main.acsevents.org/site/TR?pg=entry&fr_id=57787

If you don’t have extra money lying around (which we all know isn’t true), you should donate yourself to help fight Cancer.  Helping can be volunteering and all that jazz, but I think that the best way to help fight Cancer is to just be with any loved ones that are fighting the fight, or have fought the fight.  Let them know that you will be there, irregardlessly.

Entrevistas y discusiones sobre los diferentes deportes del momento. (Discusion/Charla, 30 Mins.)…in case any was wondering what I am watching on TV tonight.

My dog sleeps on a bean bag that is too sized two small for him.  The result is that his head dangles below his body.  I think he does it to get more blood flow to his brain in the hopes that we will get smrter.  I don’t have the heart to tell him that it is a lost cause.
Blake Griffin is Lame-o blame-O, but damn he is strong.  LeBron James might be better at basketball than me.

I’m out of beer.

Whenever Gonzaga is on, I root for them but I am not sure why.

I have updated my 5 people in history that I would invite to dinner.  Patrick Rothfuss is now on the list, and John Wayne is off.

How can you make it all the way to the NBA and not be able to make a free throw?  I know there are some physics issues as you get taller, but seriously. 

Have you ever misspelled a word so badly that MS Word does not even give you the red underline?

Ever since I heard the word twerking I thought it was one thing, but come to find out it was something else all along. 


We are coming up on post 100.  I will give $100 dollars to the 100th person who correctly guesses what my 100th thought is on the day that I post the 100th post.

Tuesday, February 4, 2014

Mashed Potatoes and Gravy

“If we are going to win, you all have to be shooters.  That means if you have the ball, shoot.  If someone is covering you, then pass.  Only as an absolute last resort are you to dribble.”  Now, this might be good advice for Manute Bol, but you do not teach this to 3rd-5th grade beginning basketball players.  You also don’t teach them to do reverse lay ups.  And you absolutely absolutely absolutely absolutely absolutely absolutely absolutely absolutely (it should be noted here that my strong opinion here is such that I refused to cut and paste) do not fail to even talk about defense in the first practice (and only practice before the first game).  You don’t put them on the spot to shoot from any distance outside of 10 feet as an “introduction.”

I vowed long ago never to yell at any of my kids’ coaches (exceptions include safety concerns and abuse….well no still no yelling.  Just take him out back and “explain” that it is unacceptable), but within he first .023984320482309 seconds of Cole’s first practice, I almost staged a coup. 

I am afraid that if I write more about it I will lose the last vestiges of self control that I have left, so I will move on to other rantings, namely the universe.

First off, I bought some new shoes yesterday, and I must say that they are wonderful.  Finding that pair of shoes that fits just right is kind of like when Harry Potter finds the right wand, or after sniffing and walking in circles my dog find the perfect place to crap, or finding that place that makes the perfect burger.

Now I have developed a deep and sincere love for these new shoes.  The overblown (I mean come on, they are just normal running shoes that look like every other pair of shoes that I have ever owned) happiness that I have felt must have somehow screwed up the universe, and the universe does not like to be screwed up by me.  The universe only likes to be screwed up by Ms. Universe.  The universe has a little quote from the bible that it likes to tell in situations like this.

The path of the righteous man is beset on all sides by the inequities of the selfish and the tyranny of evil men. Blessed is he who, in the name of charity and good will, shepherds the weak through the valley of darkness, for he is truly his brother's keeper and the finder of lost children. And I will strike down upon thee with great vengeance and furious anger those who attempt to poison and destroy my brothers. And you will know my name is the Lord when I lay my vengeance upon you.

So just sit right back and hear a tale, a tale of a fateful trip that started in San Mateo aboard a tiny little VW Jetta ship.  The mate was a mighty sailing kid.  The skipper always on time.  Two passengers set sail that day for a 2 hour tour, a 2 hour tour.

The weather started getting rough, the timetable was tossed.  If not for the courage of the fearless crew, the day would have been ruined, the day would have been ruined.

The crew set ground on the middle chair of this uncharted UCSF floor with Cole, and Nurse Sarah too, the guy who bought a lottery ticket and hopes to be a millionaire but not his wife(who was working).  The doctor dude.  The case manager and other patients here at UCSF (for 6 bleeping hours). 

I had it in writing that today was supposed to take 2 hours, but noooooooooooooooooooo.  We (while reading this section you should have kind of a whiny, nasaly, annoying voice to do the paragraph justice) want you to stay for 6 hours.  We think that doing more testing that could potentially help to cure you from cancer and save the lives of countless other kids is important.  (Back to normal (or in the alternative a husky valley girl) voice) WHATEVER!! (What I just did there was AH-MAZING…SO AH-MAZING.

The UCSF visit was fine, nothing noteworthy.  After we were done, I drove so fast the hounds couldn’t catch me.  Down the 280 to the San Mateo.  Got home.  Grabbed Logan while Cole did a superman change into his gear.  We piled into the car and broke a section or two of the California Vehicle Code, arriving at the practice facility precisely 7 minutes before practice is scheduled to start. 

Hello universe (I bet you forgot that this whole story is about how the universe tried to make me his gimp today).  Thanks for coming by. 

Practice does not actually start at 5.  Noooooooo(start normal voice, then slightly raise the pitch until the closest person to you smacks you for being annoying.), it starts at 5:15 because there are girls playing volleyball on the court.  Really, volleyball is not even a sport.  First off there are 6 girls on a side but you only get to hit the ball a maximum of 3 times.  That means that each volley will, by rule exclude half of the team.  I saw that movie and it was called mean girls.  No thanks.  2) There is a codified do-over.  There is even a hand signal for it.  Lame-o Blame-o  C) the only good thing about volleyball is the spiking.  Spiking is an integral part of volleyball and spiking should be done all the time.  In fact you have my permission to go up to any volleyball person and ask them to teach you how to properly spike.  Make sure you use the word spike a lot so that they know that you are serious about your craft.

Some of you are thinking that the universe threw me a bone by giving me a 15 minute cushion.  My answer is two fold.  1.  Did not need it.  Crackerjack timing, that’s me.  2.  Pushing the start of practice back 15 minutes, necessarily (that is a really hard word to use without the “not.”  Only other example I can think of is “Playing volleyball, while not a sport, necessarily requires all persons involved to spike all the time.), pushed the end of practice back 15 minutes.  Normally I don’t care because more time in the gym usually = more awesome time.  However, (see above), also it pushed dinner back 15 minutes, and homie don’t play dat.

Today is February 4, 2014.  For those of you counting, we have eclipsed the three year mark since diagnosis.  Personally my anniversary date is February 11th, because that is the day that we started the first treatment of chemo.  That is the day that we started kicking Cancer’s ass.  That is my birthday.  That was the worst day of my life (kinda strange that getting the initial diagnosis was not as bad, but for me chemo day 1 was the worst because it was not real until the nurse hung that bag of fucking poison and pushed the button).

Peace out yo.