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 100^th person who correctly guesses what my 100^th thought is on the day that I post the 100^th post.

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 3^rd-5^th 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 11^th, 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.

So It Begins, Redux

…and then the evil genius somehow convinced the villagers that his perfectly innocent younger brother, was not in fact the handsome rugged lover that he seemed be.  But rather was stinky Uncle Jim….

Oh sorry, I was just telling the boys their favorite nighttime story.  Here we go.

I spent 223423ou4398897f89u98f23j9vwe823 hours at UCSF today, and during all that time (between trying to explain to Cole why Indiana Jones had a different girl in each of the movies and Cole trying to explain to me Skylander) I made a couple of decisions.

First is that I am starting a company.  I will be the CDO (Chief Dream Officer) and CWIBCIO (Chief Wouldn't It Be Cool If Officer).  I still need to fill out the executive staff.  Please see the following openings and let me know if you are interested.

CEO

CFO

CGWGTDO (Chief Guy Who Gets Things Done Officer)

CGWAKHTDTO (Chief Guy Who Actually Knows How To Do Things Officer)

We also will be needing cheap labor (Cheap labor is the grown up word for free), so if that is your cup of wax, holla.

Did you see how I gave you a teaser about Cole in an earlier paragraph, but am delaying the update so that you are forced to sit in my boat of crazy and float up the river of Jim?  Did you see, huh, did you see?

Watching a commercial about the freedom cane at hurricane.com.  Seriously.  Not too drunk, and not watching Fox News.  You get a free wrist strap, free travel case, and it somehow fights communism, I think.

Fine, I will tell you about Cole.  We started LEE011 (that is its NSA designation, I am not at liberty to even tell you that its real name is little green pill, and in fact can’t even tell you that the NSA is involved in this at all.  Fortunately the government can’t eavesdrop on this conversation because it is protected by parentheses) today, and it was wildly underwhelming.  The only interesting event was that we were supposed to take the medicine at 9:00, and then stay for 8 hours to do lab draws and ECGs (come to find out EKG is a European term.  The proper Merican way to say it is ECG.  After having my patriotic strings tugged by the freedom cane, I feel that it is only right for me to say ECG).  Now for those of you who don’t know, 9:00 is the hospital word for 11:45 (it is also the attorney word), but it is not mine.  So we rolled in at 8:45, and did not get out of there until 7:15 this evening.  I am not sure if I am more pissed about missing dinner, missing playing with Oliver and Logan, or missed the chance to see Patrick Rothfuss, who was in SF today.

That aside, Cole and I had a good time.  We found, lost, pursued, and ultimately obtained the Arc of the Covenant.  We returned the sacred stones to the village, and freed the slave children with the help of (Cole’s word) Roundhouse.  We were on our way to saving the Holy Grail from the Nazis, but my eyeballs fell out so we played a little Munchkin.  All in all it was a fun time for us.  We still have a few more of these all day sessions, and next time I think that we will spend the entire 8 (hospital word for 32) hours learning how to make those around you feel like they are going crazy (you know….looking at a spot in the ceiling with a quizzical look on your face, every time the person starts talking you look behind you, or you dress in drag and ask the person if this dress goes with corn on the cob).

Sound like fun, huh?  Me too.  I am looking forward to it too.  For now; however, please raise your glasses and toast Cole, Historian who was never accused of plagiarism.    

Yo, check out the hook while my DJ revolve it.  That’s right amigos(and amigas) (and amigo/as)(and amigo/a/o/as), I’m back.  Of course being back unfortunately means that all is not perfect in the land of we.   The following is a shameless cut and paste job from two emails that I previously sent to the royal council, which are now deemed to be unclassified.

For those of you new to this little peek into my scrambled eggs, you should read my earlier blogs for context (and you should read them backwards while listening to DJ Jazzy Jeff and the Fresh Prince in Portuguese for fun).  Butt the moistest important thing to note is that Cole has been off any sort of treatment since Octoberish.

The imaging that we did this week came back.  The primary spot in the belly shows absolutely no change.  The spot in the leg has no size change, but a considerable change in the brightness on the MIBG scan (indicating more hot cells as opposed to mature cells).  There is also a new spot in the hip that showed up on MIBG.  It is in an area where disease had been seen on MRI before, but not on MIBG.  The reason that the area did not show up on MIBG initially is that when he was first diagnosed, that area had a type of disease (starts with an L and sounds something like litigatory) that is eating at the bone as opposed to stuck to the bone.  It is very tiny.

Followed by:

We met with UCSF yesterday.  We are starting a new study on Monday.  The medicine is called LEE0011.  The good thing about it is that it is a pill that he takes once per day for 21 days, then 7 off (1 cycle)

For the first two cycles we will spend each Monday hanging out at UCSF for all day sessions of lab draws (one lab draw at hours 1 2 4 8, with a lot of playstation and Munchkin in between).  After that we do imaging.  If disease is same or better, then we stay on it.

As we progress through the cycles, we will do imaging every 2 cycles.  After 10 cycles, we will move to imaging every 4 cycles.

Potential side effects are the same as everything else (nausea, low counts, etc).  It appears that the possibility of hair loss is less than other stuff he has taken.  

This is an extremely new study.  They have not finished the Phase I study in adults yet, and this is the first group of kids.  So while this drug has the potential to be a very long term treatment option, there is a lot that we don't know. 

This med goes after a certain protein that is somehow connected to the development of cancer cells.  This means that it is not an immunotherapy (which tries to teach the immune system that cancer is bad), but not really a traditional chemo (which tries to kill the cancer cells quicker than the healthy cells).

Soooooo, on Monday Cole and I start the machine back up with a marathon session at UCSF PCRC (eieo).  I kind of feel like MJ coming back to the NBA.  I feel that way partially because we have been away from the thing that seems to define me, and partially because I like to dream that I am 6’8” and can fly.

Coming back to the world that I have come to know so well, too well, a really suckily amount well, I have begun to reminisce on all the riducuolsity that we have been through.  This list is not necessarily all inclusive (unless I happen to get lucky and remember it all), nor is it necessarily in order.  Here goes (bonus points if you can name the tune of the song that this list should be played to (or is it to which this list should be played or is it to wit this list whom be played or is it pick the damn song that done goes wif my lists yo)

7(or some number, ask Elisa as she understands better than me that numbers have different values and are not supposed to be picked just by whether or not they match you shoes) rounds Standard Chemo, with hair loss, weight loss, and nausea kickers.

Surgery to remove the tumor (our insurance only covered 90% of the procedure so we only got 90% of the tumor.)

Immunotherapy (which is supposed to the be to chemo what chemo was to letting people die)

High dose chemo with a stem cell transfusion (this one was magic.  They explained the science and I think that they made it up and just used magic)

Radiation (tattoos as a bonus, and a cool Russian dude who regularly stole Cole.  Not sure if he worked there but he seemed nice)

MIBG therapy (total science fiction bizzaro treatment.  Saw the bill that UCSF sent to Kaiser on this one week treatment.  Unless you live in the Bay Area or NYC, it most likely cost more than your house.  Thank [enter deity here] that there is one adult in my household who chose the career path over the job path in Life.)  Got to wear a Geiger counter for this one.  Kind of cool.

A few random therapies that had to be aborted due to the abdominal tumor issue.

A pill treatment that was so bananananans that Cole had to register with some organization and verify that he was not pregnant (I will not go into how they verified that he was not pregnant, but I will say that I will never be able to look at applesauce the same way.)

He had to eat this powdered medicine that made eating Durian fruit seem like eating something really tasty (I know I should have made a cooler or more vivid comparison, but I did not want to.  Don’t judge me.  Don’t you dare judge me)

So we are 18 days away from the 3 year anniversary of the first day of the first treatment.  With all the crap that I just listed all I can say if we are still here.  We are not going anywhere, and fuck you cancer.

Please raise your glasses and toast Cole, one bad ass move special effects engineer.

4-19-13

I wish I was a baller.  I wish I was a little bit taller.  I wish I had a rabbit in a hat and a 6 4 Impalla. 

There are too many people to thank for all that they have done for us over the last 2+ years, but I am going to throw a shout out to one young lady.  Last Sunday, a girl from our church decided that she wanted to throw Cole a birthday party.  It was a great success, and Cole really enjoyed himself.  Despite being shy at first, Logan even eventually warmed up and had a good time.  His favorite part was when he got to give Cole a whipped cream mustache.  Thank you Anna.  You did a great thing.

So here is what had happeneded.  When Dr. Sullivan poked a camera into Cole’s belly area, she found a golf ball sized mass and some damaged intestine.  As a result, she went in and pulled out the mass.  She also cut out the damaged intestine and reattached the ends (basically the same thing that I do with my sprinkler system every year).  Cole now has 27’ minus 40cm of intestine (for all of you red blooded Mericans who do not know how long a cm is, too bad), and no mass. 

The mass appears to be made up of mature cells.  Now while many (your humble bumble author notwithstanding) people aspire to achieve maturity, cancer cells do not.  In the world of cancer, mature = begnin = not spreading = pretty freakin awesome.  This opens up the possibility that the other cancer spots are also mature.

We are hoping that with this mass being gone, which they are pretty sure caused the damage to the intestines, the stomach pain will be gone as well.  Just think, mature cancer cells, no stomach pain…..I can live with that.  So can Cole.

Cole is recovering nicely.  He came home today and when I asked him what he wanted to eat (he had basically not eaten any real food since noon on Sunday), he said, “anything, as long as it is meat.”  That’s my boy.

4-15-13 (Buy your local tax person a big fat shot)

So let’s go back in time a little shall we?  When last we spoke, prior to the last time we spoke, but we are not really speaking, well I am speaking but since I am sitting all by myself in the surgery waiting room, it is a little bit strange, the olderish lady near me is giving me strange looks, she might be hitting on me, wait they just called her name, and her name is Mrs. Robinson, unbelievable, you can’t make this stuff up, well maybe you can, (note that while writing this “sentence”, MS Word did not underline any part of it green.  That means that I did not violate any grammery rules.  Either that or Word has given up on me as a lost cause.)

For those of you keeping score, last November we were deeply involved in a fight against that stupid slow growing myco-whatever bug that prevented Cole from drinking as much milk as he wanted.  Well just as we were beating that bug down, Cole caught another bug.  This one came from the gut and sent us back into the hospital for a couple of days.  After, of course, a few trips to the ER.

Coming out of this experience, UCSF decided to switch us off to a non-immuno suppressing treatment.  Now I have been a part of this fight for over two years now, and we have seen some crazy treatments (see BMT, MIBG therapy, etc.).  This new one seems, on its surface to be a pretty calm and benign treatment.  All Cole has to do is take an oral medicine three times per day for a week, then take two weeks off.  Then repeat till forever, I think.  As you should have been able to guess by now (if you were not able to guess, please see an adult, Jackson, or Cole for assistance), there is a twist…or two.  The medicine is not a pill, nor is it a liquid.  Nooooooooooooo, that would not be consistent with how UCSF gets down on the med front.

This medicine comes in a “powder” form.  I say “powder” because the consent forms refer to it as “powder.”  Now when I think of powder (notice the lack of “” to distinguish differences in meaning.  Don’t feel sad, some day you will start to understand how my world works.), I think of chocolate milk powder, Gatorade powder, or maybe lemonade powder.  ‘parently; however, “powder” is more like concrete “powder” or Metamucil “powder.”  In addition, the medicine smells like the apartment on 1^st from back in the day (think (insert very high pitch Asian female accent) Chriiis and Jiiim.  Think orange couch that would hold on to your basketball shorts even if you are performing commando operations, much to the chagrin of your future sister-in-law).  The final kicker of this medicine is that it cannot be mixed with anything that is high in fat (which means, again, no milk.  It also means that it cannot be mixed with bacon grease).  So three times a day I had to make some crazy concoction (thank Zeus that I was a trained master mixologist) involving sorbets, soda, and wood chips and then force Cole to scarf it down.  If you remember the scene in Harry Potter 6 when Harry had to force Dumbledore to take the potion in the cave, then you have a good image of Cole (sans beard) taking this medicine.

The only kind of cool thing that resulted from the last infection and the fact that we are on an oral medication study is that they took out the pic(k?) line.  This means that I don’t have to wrap the boy up in cellophane (Mr. Cellophane do you know my name Mr. Cellophane) to take a shower.  He has been swimming without having to worry about the stupid line being submerged.

After Cole got out of the hospital the last time, and even though we have started this new med, he has still been having stomach pains off and on.  They did another CT scan and found out that he has a medical mystery inside his gut.  So the wonderful Dr. Sullivan is, as I type, poking around in his belly to try and figure out what is going on.  I will update when I find out more information.  Until then please raise your glasses and toast Cole, RN (which he says is a better job because you get to care for the patient more than a doctor does).

4/14/13

Where to begin?  Where indeed?  What if I wrote an entire piece all in questions?  How would that make you feel?  Did you miss me?  I bet you did?  Did you know that if you put a question mark at the end of a non-question sentence it becomes a question?

OK, now that we are all warmed up, let us begin.  First off, it has been a while since my last post and much has happened, but I don’t really feel like going into all of it right now so I will just start with where we are tonight, and then maybe work backwards o’er the next few days.

Not sure who all I have talked to, and when that last was so here is an update on Cole.

Last Thursday we went in for a CT-A and ultrasound to try and figure out why he has been having the stomach pains.  They found three things.

1.  There are now multiple areas of the small intestine that are showing damage.  If you remember there was one area of damage last time he was admitted.  They think that this is more of the radiation memory thing.

2.  They saw a spot of something outside, near, but not touching, the intestines.  The first thought was that it was new disease.  After all of Kaiser (oncology, radiation oncology, and GI docs) consulted with all of UCSF, they now do not think that it is disease.  The reason for this thought is that there are no other indicators (labs are all completely clean) to support new disease.

The result of all of this is that they are going to do a scope from the top and bottom (referred to as the skewer my son with cameras procedure) to look inside the GI system.  In addition, Dr. Sullivan is going to do a laproscopic procedure to look at the outside of the area.  She is also going to do a biopsy of the spot that is new.

We just checked into Room 3206 of Chez Kaiser to get ready for these procedures (get ready is the medical term for pour drain-o down him to clean him out).  Assuming that all goes well, he should be getting out on Tues or Wed.  There is a chance that when Sullivan goes in, she will see that the damaged part of the bowel is too damaged to leave alone, and she will perform a Control-X/Control-V procedure.

I learned today that we have 27 feet of bowel (might be more, not sure if we were only talking about the small intestine) and we only actually need 40cm.

I will update everyone on Monday afternoon after we get the results and know more.  For now; however, please raise your glasses and toast Cole, Zombie Killer #1.