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.