Dude, Cancer sucks. I will prove it to you.

Saturday, April 20, 2013

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.

Monday, April 15, 2013

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 1st 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).

Sunday, April 14, 2013

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.