1-3-12

Hospitals smell funny.  Sleeping in the little room on the uncomfortable torture device sucks (although the suckiness is much less since the acquisition of the magic air mattress).  Very loud nurses coming in at 1am making more noise than they should and talking to themselves is ridiculous.  Beeping machines minutes after I have fallen asleep is just plain annoying.  All these, and still I miss being there.

Not being in the hospital is like having to sit out of a big game because you are injured.  You have faith in your team, and you know that they can get the job done; however, you still want to be there to make sure that your team wins. 

Today Cole finished day 2 of the 4 day treatment for this week.  This is the nasty week, and the nastiness started today.  Fortunately Chris was there today, and we all know that he is well versed in nastiness.  Wait, did that last sentence seem like an inappropriate comment?  Oh good, that was the intention.

Cole does seem to be doing better that the last time he had this same series of meds.  He did have a pretty significant fever (topped out at 104), but it seems to be under control now.  These fevers are one of the common side effects of this regimen, but it still sucks to see him suffer through it.  I am sure that in a few days he will be back to his normal self.  For now; however, please raise your glasses and toast Cole, pirate hunter.

1-2-12

Happy New Year

Let me tell you what I am tired of…

Well first, I haven’t written in a while.  I don’t know why, just haven’t felt like it.  I know many of you have missed the daily peek into my brain (for which you should really have your head examined), so welcome back.

I don’t remember what my last post was, so I will just give an overall update. 

Cole is working his way through the immunotherapy portion of his treatment.  If all goes according to plan, this should be his last therapy that includes hospitalizations.  Within the immunotherapy world, he is working through the 4^th of 6 phases (fortunately only 5 of which include hospitalizations).  Phase 4 is the nastiest one, and I am not looking forward to it.  Grandma Kathy came out for week one of this phase and Unca Chris is out this week for week two.  Strangely, I am having trouble coming to grips with the fact that I will not be at the hospital, and possibly will not be back again.  It is wonderful that we have so many family members who are willing and able to set their lives aside to help out. 

Oooh, just had a random thought.  They should totally remake Red Dawn.  Not sure how to remake it and have it be relevant to today, but that needs to happen.  WOLVERINES!!!!!!!!!!!!!!

Cole has (now kind of unsurprisingly) been responding very well so far.  His hair is all the way back, and has grown into an amazingly combed position.  He is eating well (amazingly mo betta in the hospital last time, where he usually does not eat anything)

Over Thanksgiving, we went on the most amazing trip to Florida, courtesy of Make A Wish.  I know many of you followed my sporadic tweeting so you have some idea of how the trip went.  For those of you who didn’t, it was killer.  I might write about the trip in more detail in another posting, but for now rest assured that we had the best time.  Thanks to Chris’ team for coming with us.

Cole has really gotten into Star Wars lately.  He and I watched A New Hope in the hospital, Empire Strikes Back (too much talking for him), and Return of the Jedi.  We have also been running through Star Wars Lego on the Wii. 

Now back to what I am tired of.  I am tired of walking past Cole’s room at 10:13 pm, and not seeing him.  I am tired of missing work because this damn disease keeps him from going to school.  I am tired of worrying about how we are going to make up the missed pay from missing work.  I am tired of being stressed out about the fact that I am almost out of FMLA days.  I am tired of having to explain to Logan that Cole has to go to the hospital again.  I am tired of Cancer.

Well that is all for now.  Please keep Cole, and the rest of our family, in your thoughts and prayers.  Also please raise your glasses and toast Cole, Jedi Knight.

10-3-11

We have now booked 24 hours here in the PICU for round one of immunotherapy.  Before we get to a wrap up of today’s events, we have some old business to take care of.

In my last posting I did not provide my readers with the results of the tests that were done a few weeks ago.  Please accept my almost humble, and slightly sincere apologies.  The tests were generally good.  The only area that shows any active cells is that one spot that the surgeon could not get.  The bone marrow looks good, and the parts of the bones (hip) that had been chewed up a little are starting to grow back.  So while we are not completely out of the woods yet, we are on the right track, and are moving in the right direction.

Now on to our current experience.  We checked in last night, and I was very pleasantly surprised to see that we had been upgraded to the corner presidential suite (I am pretty sure that it was our frequent hospital miles and/or my amazing good looks).  All day I have been trying to reserve this room for next time.  The space is even big enough for an air mattress.  Now while I am all for nostalgia….air mattress v stupid misshapen uncomfortable torture device chair/bed thing……um…..this seems like a trick question……I think it is a squirrel but I am going to say Jesus.

Our first nurse was very nice, was cranially dotted, listened to every word I had to say about Cole’s medications, and (come to find out) paid me no mind whatsoever.  Fortunately the doctor remembered Cole (aka the VIP, aka Mac Daddy, aka The Little Engine that Could), and rec-o-nized.

The overnight nurse was apparently tasked with remodeling the room, or maybe it was that she was born with sledge hammers instead of hands, or maybe it was that she knew that I was uncomfortable sleeping on the torture device so she wanted to make sure that I was not sleeping.  Whatever the reason, she was louder and more annoying that any Queen ever was.  Here is some serious advice for all you nursing students (as well as anyone who has no sense), if you are working the graveyard shift and you go into a room to check vitals, check a machine, etc, and you notice that all the people in the room are asleep (2:30 am, TV off, lights off, lack of significant movement, possible snoring….all good indicators of a sleeping room), then there is no need for you to talk to yourself (nor to talk to the voices in your head….they are probably asleep too) out loud.  Seriously.

Today we have had two very awesome nurses (and they also seem to be good at medical stuff too). 

They pre-medicated (insert George Carlin rant about how giving medication before is not premedication, it is just medication, but I am too tired to run that one out) Cole prior to starting him on the actual antibody (the antibody is the hook and signpost thingie from my last post that is the foundation of immunotherapy).  One of the pre—medication drugs that they gave him was Benadryl, which resulted in Cole taking a nap for most of the morning. 

This afternoon, we played a little Wii (My Sims and ThrillVille were the soup de jours of the day), and then after we were all warmed up, we pulled out the D&D.  After engaging in a few battles, Cole decided that he wanted to be the DM (for those of you who are lost, please find your local nerd and get caught up).

As DM, Cole shows a complete and utter disregard for the rules of the game as well as no interest in keeping to reality (even within the relative framework of D&D).  He makes things up as he goes along.  If you ever play with him you have to understand that the colorful story is way more important to him than winning, losing, actually playing.  It is AWESOME.  I love seeing his creativity. 

By way of example, I had just killed about 8 minions and recovered the mechanical horse from the swarm of 12 goblins that had been riding it.  I then fought a mummy who was eventually eaten by said horse and pooped out.  As I scoured all the bodies for treasure I found the following items (it is important for those of you who do not have any nerds locked away that can give you perspective.  This game is set in Mid-Evil times.  Think Lord of the Rings, King Arthur, Swords, no plumbing, etc): 1 million gold coins, a key, a treasure chest, a TV screen, some garbage cans, and some more garbage cans.  I tried to see if the TV worked, and when I turned it on, the picture was of my party trying to save the princess (at which point my ½ sized DM said, “Do you think it is a good idea to turn it off?”  Uh….of course it is.).  Love it.

Tomorrow we have to do double homework (today’s and tomorrows) or else a certain wife who will remain nameless will kill me until I die from it.  Until then please raise your glasses and toast Cole, creative genius. 

10-1-11

Tomorrow we begin immunotherapy.  This phase should be the last hospital phase of his treatments.  For those of you who aren’t oncologists, let me explain what immunotherapy is. 

Basically cancer is an evil villan dressed in a disguise.  The body’s police force (white blood cells/T Cells, et al.) does not see the cancer cells for what they are which allows the cancer to continue to reproduce.  Immunotherapy consists of sending special undercover agents into the body.  These agents have a hook on one end that will only attach to the specific kind of cancer that is being targeted.  On the other end is a big neon sign that says, “Evildoer here!! Come kill the mofo.”  The body’s police force then will learn what the disguised cancer cells look like, and can eliminate any new cells that pop up.

So that is the science.  Now to the kid.  Cole has been feeling great.  His hair is continuing to grow in, and the softness of it sends girls, and women alike, into a frenzy cooing and whimpering.  Wherever we go, his hair brings all the girls to the yard.  They keep offering him milkshakes and pancakes.  I don’t understand why, but I think it is an MTV thing or something.

Yesterday Cole and I had a grand adventure up in SF.  James Fitzsimmons gave us a couple of tickets to the wax museum that had been donated by El Crystal Elementary (once again San Bruno representing).  I personally don’t find wax museums very interesting, and do find them kind of creepy, but free tickets are free tickets, so off we went. 

Cole did not really enjoy the wax museum very much.  First off it was very dark and had weird eerie music.  Added to that was the fact that Cole did not really know any of the (statutes? Figures? Scary candles?) people.  While the museum was not super fun, we still were determined to have a glorious adventure.  We headed over to pier 39 to try and find something that was overpriced (never did find anything), and we soon found ourselves in a mirror maze.  We, of course, immediately put on our claw gloves and fought it out.

So it ended up being a cool adventure.  Our next few adventures will be to the Aquarium By the Bay (thanks to Keri Brown for the tickets), Alcatraz, SJ Tech museum, and Hiller Aviation Museum. 

Tomorrow night Cole and I will head over to Kaiser to start him therapy (therapy is the grown up word for getting to play as much video games as you want), but for now please raise your glasses and toast Cole, Olympic swimmer. 

9-14-11

Yesterday (Tuesday), Cole and I spent an enjoyable morning at the clinic while he was infused with IVIG.  I can honestly say with no shame at all that I have no idea what the IVIG is, nor what it does.  It seemed important to the doctors; however, that we do it, so we did. 

While we were there searching for the lost ark (come to find out it was made of legos…..and to think, they had legos way back then), I talked to the doctors about Cole’s upcoming immunotherapy.  I will discuss it more in detail in a later posting because we are still in the planning phase right now.  They did try and schedule one session for the week that we will be at DisneyWorld (thanks Make-A-Wish for hooking us up, and especially thanks for the Virgin America flight.  Not sure which is more exciting, having the super awesome Virgin America flight or the excuse to repeatedly say Virgin over and over again…hehehe), but I told him, buddy….er something.

For this past month, I have really been enjoying only working 2 days per week (other 3 days are spent watching Cole and saving Lego Gotham from supervillians and/or superheros; however, tomorrow is payday so I am sure that the unfortunate business of reality will soon set in.

In that light, I have picked up a little second job working for a wellness organization that arranges for doctors, message therapists, etc. to go into businesses and give wellness lectures and dole out free messages (along with a catered lunch from Subway) for employees.  It probably won’t generate a bunch of money, but I can do the work remotely which is a good thing.  If anyone out there has a company that is interested let me know.  It is totally free to the company…..ok fine, enough pitching (but since I will be working as an independent contractor, and since I did some work via this blog, and since I am writing this blog on BART, I will be able to write off all my BART fees (despite that they are already pre-taxed), right?).

Now on to Cole……………………………………………………………………………………. (holding down the period button reminds me of when they came out with the turbo controller for Nintendo (or Sega?).  Remember how many Contras you could wipe out with that thing?)…………………………..  Cole has hair.  Think I already told you that, but it is so awesome that I told you again.  Expect me to keep telling you. 

He has been feeling really great lately.  Radiation finished up on Monday, and he seemed to not have any ill side effects.  He gets the rest of the week off, and then next week he has all the tests (CAT, MIBG, SAT, ACT, GRE, MCAT, ETC) on Tuesday and Wednesday.  Other than that he has a bunch of free time on his hands for the next couple of weeks.  He is still not cleared to go to school, but he can go out and do things.  Here is where you come in.  Any ideas on cool stuff to do around the Bay Area?  Now I know all the normal stuff, so don’t tell me about museums and such, but if you have any interesting, off the wall, kind of fun places to go, I would love to hear about it.  Otherwise I ask that you please raise your glasses and toast Cole, Backpack designer/manufacturer/retailer/consumer (fully streamlined).

9-7-11

I know that it has been a while since I last wrote, and I know that many of you have been concerned by the lack of updates.  For that I am sorry.  You see, I find it so very difficult to write when all seems to be going well (by that line of logic you can assume that if I am writing things are, or I am, less than stellar).  This weekend has given me fuel to pick up the proverbial pen again.

To start, please rest assured that everything is going well with Cole.  He is nearly done with radiation (last day is next Monday), and thus far has had no noticeable side effects.  Everyday he goes into the room with the very funny Russian guy, Alex, and they have a grand old time. 

Cole has had great energy, and little to no loss of appetite.  His hair is even growing back.  Within a week or so, his hair will be longer than mine (not really too much of an accomplishment if you have seen my dome, but at least it is a start).  He has been getting schoolwork from his teacher in San Bruno that he will have as soon as he gets cleared to go to school, and has been enjoying having me home 3 days per week (cuz I play games and video games) and has also not enjoyed it (cuz we butt heads when it comes to school work). 

The week of the 19^th of this month we have the full battery of tests (MIBG, CT, ECHO,  and HEARING), and assuming that all is how it is supposed to be, we will jump right into immunotherapy.  That should last about 5 months, give or take.  I am going to go ahead and assume that his awesomeness will continue.

Heading into this last weekend, I was upbeat.  Cole was doing well, and I had just spoken with the Make-A-Wish people and was informed that they were able to get us on the Virgin America non-stop flight for our trip to DisneyWorld.  Elisa is very tired of me blabbing on and on about getting the Virgin America flight, but she has never been on one of their flights, so please excuse her ignorance. 

Then, on Friday, the fit hit the shan.  First I lost power to some lights and plugs in my garage (including the plug that makes the washing machine wash and the freezer remain freezed).  I tried to replace the fuse (yes my house is that old) only to blow two more fuses just as soon as I popped them in.  Of course that means that I have a short in my electrical line somewhere.  Super!!!!!!!  The only slightly silver lining is that I still have my home warranty so hopefully they will take care of most, if not all, of the cost.

If that wasn’t enough, on the way home from San Jose, I get an engine overheating warning and I almost blow my engine.  I was able to get the Tourag back to the Rinde’s house (thanks to Bob’s help and the boys constantly asking me, “When is the engine going to start smoking” about 10000000000000000000000000000000000000 times).  The next day I had it towed to the shop and have since discovered that the water pump and the thermostat are bad, and that both my belts are about to snap.  $3K to fix.  Super!!!!!!!!!

I know that these are not really big things, but with everything else that is going on, it is just crap that I don’t really need.  I understand that all of this stuff is just the universe balancing itself out after giving me such amazing looks (wait, I am not that attractive, WTF universe?  I don’t even know you anymore.)

The weekend did finally turn itself around.  Liz brought Marty over for the first time, and while we did not sneak in and steal the black box that renders all encryption devices mute, we did have a nice time, and Mother ended up with some nice ramen leftovers. 

Then on Monday we had a small BBQ with some of the other families on the block.  There were a bunch of kids from brand new to 2^nd grade all running around having a great time.  I love having these little get togethers because it reminds me that even though all my stuff (house, car, hairline) seems to be breaking down, I live on a kick ass block.

That is all for now, so please raise your glasses and toast Cole, winner of the 2011 under 14 Wipeout Championship. 

8-18-11

You know, I have found that I am a very different writer depending on the time of day that I decide to write.  In the morning, I am not very polished and my filters that make me sound less insane are not quite up and running yet.  Most of my posts that leave you aksing yourself, “What is he on, and can I have some?” are morning writings.

In the afternoon and early evening, I can almost pass for a normal person (despite the fact that we all know better).  I do spell checks, I tend to engage in less parenthetical awesomeness, and sometimes I even proof read what I just wrote.

Late at night I find that I am more introspective, and have less humor than normal.  This is where I find myself tonight.  Another night with sleep difficulties.  More thoughts about the unknown future.  Some people have described stress as a big heavy weight that sits on them and seems to get heavier and heavier as time goes on.  In my experience, stress is like a cold wind.  When it is blowing lightly, you know it is there but it is not all that unpleasant.  In fact, on hot days a cold breeze helps your day be more enjoyable.  But that cold breeze can quickly turn into a biting cold wind.  Now you know that you can take it, and that it will not kill you, but the longer that wind assaults you, the more you notice how awful it makes you feel.  It makes your hands hurt.  It stings your ears.  It seems to somehow wind its way through the protective layer of clothes that you are wearing until it gets into your bones.  It envelopes you to the point that all of your attention is focused on that infernal wind.  Again you know that it will not kill you, and will not even keep you from doing what you want.  But it really sucks, and keeps you from enjoying your day to the fullest extent possible.  Tonight the wind is blowing.

Cole is doing well.  He has almost completed his first week of radiation, and thus far has had no side effects that I have seen.  Radiation thus far has been very anti-climactic.  He does not glow in the dark, and has not grown a third eyeball.  He is in good spirits and is having fun helping Elisa get her class ready for the start of school.

Starting next week I will be on FMLA and will only be working 2 days per week until Cole can go back to school.  He has an appointment in early November to check his T-Cells, but we won’t know the results for a couple of weeks after that.  I am hoping that it will not affect our Disney World trip.  I will keep you posted, but for now please raise your glasses and toast Cole, media mogul.