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.

8-15-11

Dear Cancer,

To begin with let me say Fuck you and the horse you rode in on.  I tried to warn you, and I tried to be nice.  You should have known that when we sent those CT Scans and MRI scans out to locate you, that we would find you and then send in our search and destroy team.  You failed to heed that warning, and you will suffer for it.

We first decided to go medieval on your ass by poisoning you.  You made me course poison through my boy’s body all because you decided to get aggressive.  We got most of you with the poison.  A normal entity would have just wrapped it up and called it a day after 99% of itself was destroyed though poison.  Even a virus knows to skiv off when it can no longer affect its host.  You are clearly a lower form of life than a stupid virus.

Now we are not playing around any more.  We gave you a chance to go quietly into that good night, but noooooooooo, you had to stick around.  You are like the dude who tries to hang around the bar at the very end of the night when all of the workers want to go home just because you know that you are not welcome anywhere else.  Well you know what?  You’re not welcome here.

Today is the beginning of the end for you.  Going medieval on your ass did not seem to work so we are going forward in time.  Today we are going to nuke your ass.  We are going to take all of the potential devastation that could have occurred had the Cold War gone Hot.  But here is the shitty part for you.  The Cold War never went hot because both sides knew that to nuke is to be nuked.  For you; however, you have no response to our firepower.  You have no defense to the reign of death that we are bringing you.  You have no way to stop us from killing you while simultaneously saving Cole from you.  You are done. 

Just thought you should know.  Also please be advised that after you are done we will all be raising our glasses and toasting your destruction.  Peace out, and screw you.

Regards,

Jim Baker

8-11-11

When last we spoke, Cole had a busted broviac line, and the only thing keeping him from bleeding out was a strategically placed paper clip.  Well on Monday Elisa and Logan took Cole down to Kaiser for a little splice job to repair the hole.  All was good on Monday and Tuesday.  On Wednesday night, Elisa went to the Giants game and left us boys to fend for ourselves. 

After scraping together a dinner of steak and calamari, Cole and I put Logan down for the night.  I then began to do medical stuff (yes that is the proper terminology) to Cole.  The easiest stuff to do is to flush his lines.  Naturally while flushing the lines, blood began spewing (or dripping very slowly, depending on who is telling the story) from the repair site.  Fortunately I had been well trained by the RN in the springy clogs.  I immediately found a paper clip and secured the situation.  God, I’m good (and very pretty as well.  The answer to your question is yes, I am the total package).

Since Elisa had a doctor’s appointment and potentially had to spend some time down at the County Courthouse, I had to take the day off to get another repair done.  So Cole and I made the long and harrowing journey to a land known by the locals as Santa Clara.  The journey was fraught with many dangers and obstacles, but our two tepid adventurers managed to survive.  After receiving a hero’s welcome (at which point the mayor gave us the key to the city, again), we proceeded to the clinic to finished what we had started. 

I was praised outrageously (although not without cause) for my sublime paper clip repair by all in attendance.  The medical staff was perplexed as to why the line failed again, but decided to try the repair one more time.  They prepped the site, got all of their tools ready, and were all set to cut the line off above the failed portion when Cole (who is about to start Medical School, see Doogie Howser M.D.) lifted his head and asked the doctor, “Shouldn’t you clamp the line first.”  You see the broviac line goes directly into his blood stream, and if they had not clamped the line prior to cutting it off, there would have been a huge blood stream in that room.  Gotta love it when the 6 year old knows more than the two doctors and one nurse in the room.

We went back home whereupon Elisa left us boys, again, for the evening.  This time, I did not do any medical stuff, and instead just hung Cole from the rafters by his ankles (no real reason, just seemed like fun) until Elisa returned home.

Today Elisa and Cole are going to head back down to the clinic (for those of you keeping score this is the 4^th straight day of going to the clinic) to check the line, and get labs drawn in advance of the radiation treatment that starts on Monday.  He might need a transfusion tomorrow, but otherwise should be ready to start on Monday. 

My anxiety is starting to whip itself up into a frothy frenzy for radiation.  My thinker can rationalize that this procedure will be less destructive and painful for Cole than the last two (Chemo and Stem Cell); however, I still get all worked up with images of a glowing child (not glowing in happiness, actually glowing from all the radiation) in my mind.  I am sure that it will be very anti-climactic, but for now I am going to be a wreck for a while.  You should watch; it will be fun.  For now; however, please raise your glasses and toast Cole, City Planner.

8-8-11

Good weekend.  Cole got some cool looking tattoos (although not as cool as I was hoping for) that, appropriately I guess, look like little targets.  Then, in order to make the radiation tech’s job harder cuz that’s how he rolls, Cole decided to tattoo his hands and arms with similar dots.

Cole also had a physical therapy appointment where the therapist said that he “toes out” but that structurally (bone, muscle, tendon, etc) all the parts are working right.  He thinks that the quad is just a little weak from being in the hospital bed.  Cole was given exercises that, as all physical therapy exercises are, seem to be kind of ridiculous, but since the therapist is the expert, we will follow his instructions.  I still don’t know why Cole has to have a chicken on his head while doing them, but I didn’t go to PT school, so what do I know?

On Saturday, Elisa and I had planned to go to a movie and to lunch to celebrate our anniversary.  We had PJ and Abby come over to watch the kids, and we set off.  Now because Elisa’s life is rather boring with no challenges, I decided to refrain from telling her exactly how little gas we had in the car prior to leaving.  In hindsight, that might not have been the best idea that I had that day.  Naturally we ended up running out of gas at a stoplight on a good sized hill.  I had to pop the clutch (in reverse) to get it going and then do a crazy maneuver to get the car up the hill.  While we ended up missing the movie due to the delay, popping the clutch was pretty fun.  I have not popped a clutch since my old green Honda (I sure wrecked the hell out of that car).

After not seeing the movie, we had a nice lunch at Jack’s Prime, and then headed home.  We played with the boys and seemed destined to have just another normal weekend of hanging out….but oh no…..that would be too easy.  Late in the afternoon, Elisa was flushing Cole’s line when it exploded.   Yes you read right, Cole’s line exploded and suffered a gaping hole (ok maybe a slight exaggeration, but if you have ever heard me tell a story you would know that I am unable to not add color to a story) the size of my elbow.

So we headed down to Santa Clara in order for the line to be repaired by trained medical professionals who have access to some amazing medical instruments and supplies.  Unfortunately the amazing medical supplies part turned out to be wrong.  The nurse, who wears crocs with the spring heel thing... very strange looking, pulled a total MacGyver.  He wrapped the tubing around a paper clip.  Yes you read right, a paper clip.  The paper clip kinked the tube and Cole stopped leaking blood (which for those of you who have less medical training than me (Medical training is the grown up word for watching at least two of: ER, Gray’s Anatomy, Hawthorne, Royal Pains, and the episodes of Friends when Joey was Dr. Drake Remore) is a good thing). 

The surgeon is supposed to be back in town today, and we are hoping to get a more permanent fix.  A binder clip at least.

Sunday was pretty chill.  We went to the park (Cole and I rode our bikes there), and video chatted with the Zonians over Xbox.

Hopefully today we will get Cole’s line all taken care of, and Elisa and the kids can enjoy a nice summer day.  For now, though, please raise your glasses and toast Cole, medical supplies distributor.

8-5-11

So I totally had a great idea for my next book that I will probably never actually write.  I haven’t decided if it will be a sequel to the last book that I didn’t write, or a stand alone.  I willing to accept feedback from anyone who has read any of the books that I haven’t written.

When we last spoke we had narrowed down my unfortunate swing/gravity incident to a few possibilities, and after further investigation I think that we can very clearly identify the culprit as those working on behalf of Little Foot, that little subversive. 

Now I know that you are riveted with the strangeness the seems to fall from my brain, but this blog is really about Cole, so let’s get to it.  Any objections?  No? Good, the measure passes.

Today Cole is getting a tattoo.  We thought that he deserved it given how well he has been responding to his treatments.  I suggested that he get a naked lady holding a sandwich from Columbo’s in Pacifica (insert drool here…for the sandwich, not the naked lady….come on, this is a family show…sort of), but instead he took the advice of his doctors and is getting tiny dots where they are going to aim the radiation blasts (is radiation blasts the right term?  Sounds not very accurate.  Maybe it is radiation shots….or maybe points….I think I like blasts….like blasts the Cancer back to the stone age). 

He also is going to visit a sadist physical therapist today to try and work on getting his walking and running gait back to normal.  It is going to be a long day for Elisa and Cole because the tattoo session is early this morning, and the PT is not until later this afternoon.  Fortunately Granny and Pappy Rinde live nearby and they can chill at their homestead. 

Elisa starts school later this month (goes back 8/22) which means that I will be utilizing the FMLA (Family Medical Leave Act) as well as the IGTSHFWALA (I Get To Stay Home From Work A Lot Act).  I think that we need to immediately change the law so that I can take indefinite FMLA leave with pay.  Give me Obama’s number…..wait, never mind, I’ve got it.  Alas, had to leave a message.  I guess this means that I will just have to take the unpaid leave.

I would like to say that me staying home with Cole would not have worked out without the amazing, extreme, wonderful, crazy awesome, badass, generous, selfless, lovely donations and support that we have received from so many of you.  I can not even imagine how we would have made it without all of you.  I thank you all from the bottom of my heart.  Instead of asking you to raise your glasses and toast Cole, today I raise my glass (yes I am drinking on BART on my way to work.  What of it?), and toast all of you.

8-3-11

Definition of being a fat ass: when you sit on the swing with your 3 year old son, and the swing breaks.

Definition of being old: after falling from a broken swing, your body hurts in places that were not involved in the impact.

Definition of being awesome: drinking the pain away with nice Scotch that you did not buy.

So there are a few possibilities as to why the swing broke.  1: A certain Auntie Julia weakened the structural integrity in response to, and retribution for, a certain unfortunate incident with Little Foot (I make no apologies.  He had the necessary information.  He should have talked.  No reason to take that kind of pain.  Lives were at stake.)  B) A certain Uncle Chris girthy self prematurely aged the support rope; or III. I had to suffer that great indignity in order for the universe to balance itself out when I win the lottery.

I cannot tell you how happy I have been to watch Cole these past few days.  He has great energy, has been eating well, and (other than the bald head and pipes hanging from his chest) looks and acts like any little 6 year old on summer vacation.  The second I get home from work I am attacked by two little dirty bare foot kids begging me to play with them.  Irregardlesslyness of how tired I am from a long day of sitting on my ass at work, the second I am accosted by those imps, I am ready to rock and roll.

The only thing we have noticed with respect to Cole is that his gait is not normal.  He walks and runs like his hips hurt.  We have asked him repeatedly if his legs or hips hurt, and he repeatedly (and exasperatedly) says no.  Now for those of you who know Cole, you know that he will always say that he is fine, but watching him you can tell that he is not in pain. 

The doctors think that it is just that he was in bed for almost a month, and the muscles have kind of forgotten how to move properly.  I had the same problem after my knee surgery. (random memory.  Shari’s shakes in Tucson.  Yum.) 

So homie has an appointment on Friday with the physical therapist.  I am hoping that they make him do awesomely strange exercises to help out, but that is just how I roll.

Seriously, I hope that he is able to get his normal walk back, but we will see.  For now, please raise your glasses and toast Cole, fashion designer.

8-2-11

Ok so first things first.  I have to get something off my chest.  Now I know that I am hardly a fashionista.  I also recognize that clothes worn by one generation must, and a central rule of the universe, look completely ridiculous to other generations.  I also recognize that I am rapidly becoming old.  Despite all that, I have to say that there this a fashion trend that I have been noticing that troubles me greatly.  You know what I am talking about.  Capri Pants on dudes.  Come on.  As Cole would say, “seriously.”

Now that my conscious is clear, we can move on to why we are here today.  Today I am not going to talk about Cole (except maybe tangentially), nor am I going to talk about medical stuff.  Today we need to recognize Elisa.

Eight years ago today Elisa momentarily lost her mind and married a balding, silly man.  Granted the man has a quick wit, easy going nature, and nice round backside, but let’s be frank.  He is completely off his rocker.  Still Elisa took the plunge and agreed (based primarily on the eternal promise of ready water glasses upon request) to be married.

In those ocho anos (insert ~ as appropriate for you purists), there have been many ups, and as you all well know, some staggering downs.  But through it all Elisa has held her family together, and kept her husband on the straight and narrow (well at least kept him near it.  Come on, she is only human after all…..or is she?), and has generally just been the best possible wife a man could ask for.

If you see her today, or if you get some time to drop her an email or a facebook note, wish her happy anniversary, and let her know how awesome she is.  I know that I will.

Love you babe.

So I ask that you please raise your glasses today and toast Elisa and my marriage (to each other).  I know I will.

8-1-11

Sorry we haven’t spoken in a while, but I have been having too much fun….too much fun…what’s that mean?  It’s like too much money…no such thing.  It’s like a girl too pretty, with too much class, being too lucky, or a car too fast.  Whatever they say I done, …..er something.  That distraction was your fault, not mine.

Going back to Thursday, we pick up where we left off with our tepid adventurers.  I brought Jackson and Sophia, full of grace, what a pretty face, down to la casa for a noche of pelucliaing.  Given that we had not yet watched Yogi Bear 1000000000000000000000000000000000000 times, and considering that there are not any other movies that will play on my laptop (think that Cole may have hacked it), we bundled up the Arizonas in blankets and filled them up with hot chocolate and watched Yogi Bear in our open air exterior Cineplex. 

Jax and Soapie stayed the night, and played all day on Friday with Lobert and Coley Moley Guacamole.  When Chris and I got down there, we let Elisa and Lo take a nap and the rest of us played some D&D.  The adventures were grand, the humor was crass, and the battles were won.  Good times all around.

That evening, Julia (whose favorite movie is Side Out….go ahead ask her about it.  She can quote the entire move…go ahead ask her to…..please…..please….if you do, she will give you money….please….please) and Tina (my understanding is that welcome to fb is in order) came down and we ate sausages and frozen pie (nothing is too good for big homie’s birthday). 

That evening we said our goodbyes to the Arizonas.  I just wish that our language was not so limited.  I have been trying and trying to find the words to express my thanks to them for coming out for the entire month and taking the lion’s share of hospital shifts, and for all that they did.  I think the only way to truly show my gratitude is to say: pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake pancake.  You guys are the best.

They left on Saturday morning, and Elisa and I just enjoyed hanging out with the kids.  Logan went to swim class, and got to use the kickboard.  We went down to SJ for some pizza.  Nice and relaxing.  Sunday was more of the same.  We took a fun little adventure to see the tide pools in Half Moon Bay (unfortunately the tide was in, but we had a great time anyway), ate some clam chowder, and just enjoyed having our little family all together.

This last week Cole also had his follow up appointment at UCSF, where (of course with this kid), everything looks good.  He also had an appointment with the radiation department and an appointment at the normal clinic.  They explained the process of radiation to Elisa.  Basically he has 20 sessions (one session per day M-F for 4 weeks).  Most of the sessions are lower levels of radiation, but there will be some (~6…..Elisa told me but I don’t remember the exact number if you can believe it…I know, surprising) that are higher levels which will be directed at the spots that the surgeon tagged with the clips.  Right now we are set to start this process on 8/15.

I think that is all for now, but stay tuned.  While you are staying tuned, please raise your glasses and toast Cole, stock broker.

7-24-11

Yo this weekend was off the hook.  We have a lot to talk about so we should get right to it and refrain from any distractions.  This means that we must please ask you to place your seatbacks in the upright position and return your tray tables the their locked position.  Please remove all jewelry and any shiny objects should also be put away as I am easily distracted (might be too late…I might have already become distracted….focus….focus….almost there….five more seconds and then I’ve got him…..focus….focus….yee ha, Jester’s Dead….)

Saturday was a super fun day.  I took Logan to his swim lesson where he, very enthusiastically, showed his teacher that he can put his whole head under water.  He also showed his teacher that you are not going to tell him what to do, and he will kick when he is good and ready and not a second before.  Oh he will placate her with a weak leg movement that cannot really be called a kick, but we know his game. 

Later the Arizonians came over and we had a rockin good time.  There were many secret meetings and elaborate plans that all somehow seemed to end with some combination of children throwing balls and Auntie Julia.  She screamed out in pain, but I think that deep down she really enjoyed the attention. 

When Logan went down for his nap, and the older girls went shopping, we continued our D&D adventure.  The team (also known in some gladiatorial circles as “Alotta Butt and Some Fries) fought valiantly for justice and all that cool stuff.  We eradicated many unsavory foes, and rescued those in danger. 

After Logan woke up, the kids all played and had a grand old time.  Logan especially has really taken to Sophia (he now has stated on multiple occasions that “his” Sophie Bear now lives with us.), but given her cuteness factor, who could blame him? 

By the end of all that, Cole was pretty beat.  To be honest (funny for me to ever say that with a straight face) I am amazed that he has been able to operate at the level of energy that he has.  I mean if you look at it, he went in to UCSF on 6/28.  First few days he still felt good enough to bounce around and dance, but he was still confined to this small room.  He got out on 7/22.  That is 3 weeks and 3 days of little to no exertion.  He has now been out less than 72 hours and he has been running all around chasing the Arizonians. 

Today Grandpa and Grandma Rinde came over to destroy my front patio (they had permission, don’t get mad at them).  Grandpa had a sledge hammer and was having just a grand old time so I thought that I would jump in and lay some smack down, hammer style.  Of course, I made the classic mistake of forgetting that I don’t do physical things normally (and in fact usually go out of my way to avoid doing physical things (physical things is the grown up word for moving) during the ordinary course of my life), and started swinging that stupid hammer over and over again.  Of course I hurt my knee.  Of course I will not be able to lift my arms tomorrow (wow I am old and out of shape.).

After doing a little work, I left the rest of it to the professional (professional is the grown up word for someone else) and went back to what I know and do best….nerdy things.  More D&D.  More justice fighting.  More awesome fun. 

Cole decided he wanted some chicken wings (a little tear came to my eye when I heard this.  I have never been so proud) for dinner, and since Cole has gone through everything that he has gone through, Elisa had to relent, so (Cole, make sure you use this leverage while you still can.  Eventually Momma will find a way to counter this power with one of her own.) we had some chicken wings for dinner.  AWESOME (and they really weren’t that good of wings.  They came from a frozen package and I baked them instead of frying them, but they were wings and wings are like another activity that I will not say cuz this is a family show…but it is the one that makes beasts with two backs and/or babies…., bad wings are better than no wings.

So all of the above was pretty cool, and I cannot tell you how much I love having Cole back in the house; however, concurrently with all of the awesomeness of today, we had the Car Wash Fundraiser organized by the SMAFTOAA (for those of you out of the loop, San Miguel Awesome Fundraising Team Of Awesome Awesomeness which is the grown up word for the Kaisers and Rossis).  The event was an amazing success. 

You know prior to all of this I was not a very sentimental guy (getting married, having kids, and watching Hoosiers aside), and I never really gave much thought to the goodness of people.  I was always kind of a social libertarian.  You leave me alone, I will leave you alone.  So it has been awe inspiring and humbling to see the outpouring of support and generosity of so many people.  Humans kick ass.

I need to go recover from this super awesome weekend and will post again in the not too distant future, but for now please raise your glasses and toast Cole, demolition expert.

7-22-11 Superman is Back in The Building

He’s back.  He is back.  He has come home.  He is home.  Yes, Yes, Yes, Yes, Yes, Yes, Yes, Yes, Yes, Yes (and for the record I wrote all of those out, no cutting and pasting). 

You know, I knew that the UCSF thing would be tough.  My kid gone for a month.  Seriously?  It’s almost funny how stressed out I get over each phase of this whole thing and then Cole seems to just glide through it.

When we first met with the UCSF doctors, I jokingly asked what the record time was that anyone recovered from this procedure.  The answer was 15 days post transplant by some construction worker.  Cole did 16. 

Cole seemed to have a pretty good day at home.  He played a little Wii with his uncle and cousins and then just hung out at the house.  He had good spirits, and ate a decent amount of dinner.  Around 8 or so he started to run out of gas.

Elisa hooked him up to his hydration IV and we started reading Mouse and the Motorcycle, but only got through one chapter.

I want to remind everyone that this Sunday we are having the Wash Your Car for Cole event at the self service carwash over by our house (Hillsdale and Saratoga in front of BevMo), being put on by Joe et al and Jaci et al.  The flyer is below.

We hope to see you out there on Sunday, but for now, please raise your glasses and toast Cole, badass.

Car Wash Flyer

CAR WASH FOR COLE

Wash your car and help Cole fight cancer!

Wash your car, grab a bite to eat, and help one of San Mateo Village’s bravest children beat this terrible disease. Every dollar you spend will go directly to Cole’s family and help them pay for hospital expenses.

WHEN:

Sunday, July 24

(Food and drinks available from 11 a.m. – 3 p.m.)

WHERE:

Clearwater Car Wash (directly across from BevMo)

Self-Serve Car Wash

341 East Hillsdale Boulevard

San Mateo, CA 94403

7-19-11

The badassery of Cole appears to know no bounds.  In my last post I described Cole as getting better a little bit each day.  This past weekend Cole decided that enough was enough, and a little bit each day was no longer acceptable.  His counts jumped exponentially over the weekend.  Specifically his ANC count (basically his white blood cells which fight infection, etc) went from 60 on Friday to 360 on Saturday to 1330 on Sunday to 1900 on Monday to 3000 on Tuesday morning.  Now I am not an ANCologist, but I now that that is some kick ass recovery.  The doctors are talking about the possibility of going home as early as this Friday.  That’s right.  That’s how we roll. 

I am ecstatic that Cole will be coming home, and that we are now done with phase 2 of this insane process; however, I have to temper my enthusiasm a little because we still have a long road ahead of us. 

After Cole gets out, he will have about 4 weeks off before we start with the radiation therapy.  My understanding of this therapy is that the side effects are very minor (at least compared to Chemo, but then again the effects of falling off a 3 mile high cliff are minor compared to what Cole has gone through), and he will be medically cleared to go to school.  It really freaks me out to talk about him going back to school (afraid to jinx anything), but it is a very real possibility.  The radiation will be a logistical nightmare as Cole will be going to school in San Bruno, but the treatments are going to be in Santa Clara.  The treatments are every weekday for 3-4 weeks.  The gas alone is going to case a million dollars, not to mention that we will need to figure out how to get him there and back each day.  I will probably invoke the right of prima nocta….wait that is something else….. I mean the right of FLMA (if you don’t know what FLMA is, look it up.  It will be a good research project for you), and work ½ or ¾ days. 

While this will be tough financially, it will not be anywhere near as tough as when I was only working 3 days per week.  As always, with the help and support (which is still staggeringly amazing) of our friends and family, we will make it through.

On that note, please be aware that the date of the car wash fundraiser has changed.  In my last post, I said it would be on Saturday.  That is no longer correct.  It will now be held on Sunday, July 24^th.  If you are interested in helping, or if you want more information, drop me an email and I will put you in touch with Joe and/or Jaci.  Thanks again to them for setting this up.

In other news, Logan, in his capacity as the ruler and absolute center of the universe, has made a one time exception to the ban on human slavery.  He has decreed that Sophia now belongs to him.  Sorry Chris and Tina for the loss of possession of your daughter.  If only your knees did not hurt so much, I would suggest that you try for another daughter, but this time try for one less awesome.  Oh well.

While we sort out the logistics of transferring possession of Sophie Bear to Logan, please raise your glasses and toast Cole, newscaster.

7-13-11

Let me tell you about something that I hate (besides Cancer).  I hate awards shows.  I truly do.

Let me tell you about something that I love (besides my family).  I love sports highlights.  I truly do.

So that is how I found myself watching the ESPY’S this evening.  I turned the channel and saw VCU win their award (gotta love scrappers), so I kept the show on.  The next award was the Arthur Ashe Award for Courage.  It was given to a guy who spent over 30 years in prison for a crime he didn’t commit.  He did all the stuff that you would expect of this type of award recipient (learned to box, obtained college degrees, finally was exonerated, etc.).  The only reason that I bring this up is that he was not pissed about the fact that he lost 32 years.

One of the, among the many, shitty things about this whole cancer experience, and the one that I have been having the hardest time reconciling in my mind is the feeling that Cole, and my entire family (extended), has lost, so far, six months of his life.  There were so many things that he did not get to do.  Playing with friends, going to school, you know all that stuff.  Every time I think about it, it makes me mad. 

So when Dewy (the prison guy, great name huh) did not seem pissed about the loss of time, and in fact simply said that each day he woke up in the joint he just worked to make himself happy.  Thanks Dewy.

Now on to other stuff.  First the everworking Neighbor Joe has arranged for a new fundraiser event later this month.  He has convinced the owner of the self service car wash near our house to donate all his earnings for one day to Cole.  In addition, Emily (Joe’s wife) convinced Costco to donate some food.  More details will follow, but basically we are going to ask people to come wash their cars for Cole.  We will also be cooking some food to sell as well.  Should be a good time.  Tell your friends.  Right now we are looking at July 23^rd, but I don’t know if that date is certain. 

Cole is maintaining his stoic badassness as his body recovers from the crazy chemo that he was given.  He has had some ups and downs, but seems to be improving ever so slightly each day.  I say that of course just based on conversations and reading the daily shift log because I only get to see Cole on the weekends.  I know that it is a blessing having Chris’ family out here to take the burden off of me, but I sometimes feel guilty for not carrying the burden.  I think I just miss my son.

On a separate not, why do I watch Criminal minds?  I know it is going to jack my brain up, and cause me to lose sleep.  It is not the dead bodies that messes with me.  It is the destruction of the families that comes from the loss of a loved one.  I know that, and yet when it is on, I can’t turn it off.  Oh well.

I am going to bed now, and hopefully will get some sleep.  In the meantime, please raise your glasses and toast Cole, playwright.

7-12-11

So I know that it has been a while but I have been lodging a silent protest in the hopes that if the American People realize that the only way that they will get their favorite form of entertainment back (this blog), then they need to force the NFL lockout to end.  I mean come on, I know way too much about baseball right now. 

So to, I am sure, everyone’s great delight, it appears that the NFL lockout is nearing an end, and you get your blog back.  It’s a win win.

When we last spoke Cole had been admitted to UCSF to begin his stem cell transfusion.  Since then he has been dosed with the insane amount of Chemo, and then last Wednesday he received his own stem cells back.  The Stem Cell transfusion was Day 0, in the parlance of BMT (which is Bone Marrow Transplant, not a Subway sandwich) talk.

With each passing day, his blood counts dropped, and he felt worse and worse accordingly.  His immune system is now, and has been for a few days now, basically 100% compromised (even to the point that his immunizations are gone).  He picked up a little bug that would normally not affect anyone, but with him, he was pretty sick the last 3 days.  They finally figured out what kind of bacteria it was, and gave him antibiotics accordingly and I am happy to report that he is doing much better today.

This phase has already been, to me at least, about one million time more stressful than the last phase.  I think that the main difference is that during the last phase Cole would come home.  We were always living with this damn cancer but at least he was home.  Now; however, he has been gone for 2 weeks.  And with every passing moment the pressure gets more and more.  I just want him home.  I just want this over.  Fuck you cancer.

Please raise your glasses and toast Cole, Psycologist.

6-30-11

Dear Cole,

The last few nights I have had the opportunity to watch some great movies.  Specifically I have watched Shawshank, One Flew Over the Cookoo’s Nest, and Few Good Men, and I have started thinking about great movies. 

Great movies have a couple of characteristics that identify them as great movies.  Now movies are art, and art is necessarily subjective so when determining what makes a movie great, personal opinions have to be disregarded.  Or rather we mush regard the opinions of the masses who may like some crappy movie just because it has a lot of explosions and boobs the same as some obscure movie that the film elite decides is an important movie. 

In determining whether a movie is great there are really only three characteristics that you must look for.  Number 1: if you happen to run across a movie that you have not seen for a while and it is on commercial television, you find that you have to watch it, irregardlessly of the time that it comes on (and in fact the later it is the higher greatness scale it has).  Number B: there is some great character that is usually not the main character (think Big Jack in A Few Good Men).  And 3: there is a line in the movie that given the appropriate set up, you can’t resist saying it.

****

As you can tell this isn’t my normal blog post because since Tuesday Cole has been at UCSF, and I have not seen him.  I am trying to hold it together, but not seeing him, and not being there to help is killing me.  Fortunately I will be there tomorrow night.  I miss my son.

After I get there tomorrow, I will try and put together a good update.  For now; however, please raise your glasses and toast Cole, winner of nine academy awards.

6-27-11, another one

One love
One blood
One life
You got to do what you should
One life
With each other
Sisters, brothers
One life
But we're not the same
We get to
Carry each other
Carry each other

That’s right baby, we are set for UCSF, and we are in the one cycle group.  For those of you keeping score, that means that Cole could be home by the end of July.  Assuming all goes well he will take August off, and then start radiation in September.  Following that he will have 6 cycles (similar to the previous Chemo cycles with respect to duration) of immunotherapy.

Now I am not sure if I have become sentimental throughout this whole process or if the universe is talking to me (or maybe it always has and I am just now listening), but the last few days have been very strange.  Please allow me to elaborate.

Since the initial diagnosis experience, I have been doing a pretty good job of keeping it together.  We have a plan.  We have an enemy.  We execute the plan.  We defeat the enemy.  It is simple, and it was working.  So then you can understand how badly I was hit when Dr. Taggart first told me on Thursday that the MIBG reading showed new, active cancer cells.  This was not part of the plan.  Eradication was the plan, not growth.  WTF?

Dr. Taggart did say that she disagreed with the reading, but by then the box had been opened, and in my mind, the worst case scenario had become a foregone conclusion.  To make matters worse, we were not going to find out if the cancer had spread, much less if we were going to be able to start the UCSF procedure, until Monday.  Fortunately Elisa kept us sane, or at least stopped us from going completely crazy, by planning and then flawlessly executing a weekend of awesomeness.

Despite that, I was on pins and needles all day today.  There were so many things that, if just one had not gone our way, would have derailed us.  First Cole had a dentist appointment to fill some cavities.  If problems arose, or if there were complications, or if the wind decided to blow the wrong way, UCSF gets delayed.  As always, Cole sailed though with such ease that I am beginning to question whether I am just becoming a paranoid crazy person.

I got word of the successful dentist appointment at around 8:45ish (for exact times please ask Elisa), and then had to endure my own overactive paranoid imagination until his clinic appointment at 2.  Again, of course (now I am beginning to think he does it on purpose) good news came our way.  Not only was there no new active cancer cells, and not only were we cleared to start at UCSF tomorrow, but we were even randomized into the one cycle group (which means that this phase will be about 8 weeks shorter than if we were in the two cycle group).

So that is kind of the factual world that I have been living in.  Now two things have happened during this time that have perked my ears up like when our dog, Charley, hears….well whatever it is that he hears that make his ears perk up…..

The first thing that happened was yesterday after a dinner of Chinese food, we all opened our fortune cookies.  Elisa’s, Logan’s, and mine were all unremarkable; however, Cole’s read as follows, “Determination will get you through this.”  Talk about freaky.

Then, and this one was a little bit more obtuse, I was watching Shawshank Redemption (awesome freaking movie.  It is one of those movies that I never think about making an effort to watch, but then when I happen to watch it, I think to myself why haven’t I been watching this movie every day) and the hope concept caught my attention.  For those of you who haven’t seen it (you know now that I think about it, I am not going to give a plot summary for this one.  If you haven’t seen this movie, shame on you).  So anyway right after Brooks’ demise, Red talks about the danger of hope.  After his lines, I found myself applying his ideas to my life.  I do understand the danger of hope.  Within the context of cancer, hope can set you up for the destruction of your mind/soul/emotional stability/whatever.  Assume the worst and you can only be pleasantly surprised.

Towards the end of the movie (Buxton Hay fields, long wall, black obsidian), Andy tells us otherwise.  “Hope is a good thing, maybe the best of things, and good things never die.”  True dat.

If you have seen the movie, go watch it again.  If you have not, go watch it (Cole demands it).  In the meantime, raise your glasses and toast Cole, male model.