Jason's Untimely Thoughts

Where I work, this used to evidently be one of the busiest days of the year.  Or maybe we were so far behind that today was busy trying to catch up.  Currently, it’s a day when everyone comes in to work but has nothing to do.  We’ll repeat the exercise tomorrow.  Well, I won’t, but I feel bad for those that will.  And I used to would have.

Random thoughts on Thanksgiving Weekend:

• Who decided it’s called “Black Friday” and why do we let them decide anything?  The economy seems to be pinning their hopes on a big spending day, yet we call it Black Friday.  Wasn’t “Black Monday” the day the stock market crashed (one time, not one of the recent times)?   I propose “It’s Really Rather Quite Nice, Come Out and Shop Friday”.  Really, I don’t care, I’m not going to the stores today no matter what you call it.
• I’m relatively close to finalizing Sarah’s memorial stone.  That sure is fun.  It starts with trying to figure out what to call it.  Avoid tombstone and gravestone at all costs, and then goes downhill from there.  Although it’s no fun, I’m comfortable with both the design and the people doing the work, so unless something unravels it’s as good as it could be there.
• Can’t remember if I’ve put this anywhere else or not, so here it is… when it’s time for someone to pick out my memorial stone.  I want a bench.  A relatively plain bench.  Name and dates are plenty, if someone feels like something else is appropriate to be written, that’s ok too.
• The kids and I enjoyed Thanksgiving with Sarah’s mom in the morning, with Sarah’s dad and many others in the afternoon.  We were happy to be with everyone and appreciate it all.  The kids had a great time, I had a rough time.  Not too much thanks coming out of me this Thanksgiving.
• Mizzou plays KU in football tomorrow at 11:30, in KC.  They’ve also announced it will be in KC for the next 4 years.  I’m glad, as long as it’s on Thanksgiving weekend.  Town is not the same that weekend anyway with school out, so having it in KC gives it some spice.  Plus it keeps me out of Lawrence every other year.
• This will be my 12th MU game of the year, assuming I’ll make the remaining 2 as well, will put me at 27 games in 2 years in 6 or 7 states.  Relatively absurd.
• There’s strong internet rumor that MU will wear gold jerseys tomorrow for the game.  We’ll see, I guess.
• More fashion & football, as long as the damn shoebirds don’t wear red socks, I really don’t care what either team wears.  And I’m serious about them wearing red socks, it’s disgusting and a disgrace.  For some of why I think that, here are four articles written by someone named Keith Piontek.  Part 1, Why most of the trash talked by ku fans is inaccurate.  Part 2, Why it seems the shoebirds were proud of the name jayhawk when it was chosen.  Part 3, Why Quantrill and the band raided Lawrence.  And Part 4, his conclusions.  A lot of reading, which could mostly be summed up as if we were the Missouri Bushwackers, most of the typical ku fan smack-talk would be close to valid.  As it is, it’s hypocritical and ignorant.  And the fact they typically wear red socks when playing MU, but only that game, is even more of both.  (Credit to them for not wearing them last year, though.  One more year of that and I’ll be done mentioning it.)

I’m writing this for Adelaide and Jack, trying to put the story of Sarah’s carcinoid fight in one place for their benefit whenever they’re ready to read about it.  Don’t want to write it, but need to while I can.

In May of 2006, Sarah, Adelaide, Jack, and I were in Malden visiting Papa Bill and Grandma Nancy while Jan was visiting from Switzerland.  Adelaide would have been 3, Jack not quite 1, at that time.  Early on the morning of May 7, Sarah began complaining of stomach pain.  She tried to sleep through it for a bit, but then woke me stating she needed to go see a doctor.  While getting up and around, she got sick and was obviously in a lot of pain.

Bill & I debated driving Sarah to Poplar Bluff ourselves versus calling an ambulance, eventually settling on going to the ambulance shed directly (it was just a few blocks away and we were already at the car).  We arrived at the ambulance shed and woke up the workers.  After a few minutes, Sarah & I were in the ambulance headed to Poplar Bluff, while Bill followed us in his car.  Mom & Jan kept the kids in Malden.  The ambulance driver wasn’t messing around, we arrived very quickly, just as the sun was coming up.  We killed a bird on the way over there, when it hit the ambulance – a story which I thought would eventually become funny but didn’t.

At the emergency room in Poplar Bluff, we arrived just prior to shift change.  This meant it took a while for the doctors to get to her and caused some confusion.  I guess it really meant the first group did their thing, asked their questions, then the shift changed, the second group repeated.  Sarah was in more and more pain, which they finally helped her with.

Ultimately, the pre-surgical diagnosis was a perforated stomach or intestine with the need to do surgery to repair that perforation.  They moved Sarah into the surgery room and moved me to a normal hospital room, shared with another lady, to wait.  After a couple of hours and scarfing down some breakfast/lunch, a nurse came to tell me the doctor would be visiting me shortly, but wanted to meet in another part of the hospital.  So I went to that area, which was completely deserted.  (Should have been obvious they were planning on giving me bad news and didn’t want to do it in front of another patient, but I was oblivious to the clues.)

Dr. Gieselman, the surgeon, then showed up to tell me there was no good way to deliver the news and that he’d discovered Sarah had a tumor in her stomach, had felt around some and found more in her liver, and at this time he believed she had stomach carcinoma.  (Or that’s what I understood and was the reaction of the nurses, it really turned out to be carcinoid, not carcinoma, a very important distinction, from the pathology from surgery.)

While they prepared to move Sarah to a normal room, I called her family to let them know.  They all came from Columbia to Poplar Bluff immediately.  That night, I stayed in the room with Sarah while she came in and out of consciousness.  Her short-term memory was gone, as they told me it would be, so I’d explain where she was, why she was on a respirator, etc.  Eventually, I started to also tell her about the diagnosis and that we were going to figure it all out.  After 4-5 times of that, she started to remember.  While she could only barely communicate because of the medical equipment, it was clear she got it, was scared, but was also handling it well.
Over the next several days she recovered very well.  The intubation came out after 2-3 days, she was able to walk around, and received lots and lots of visitors.  Mentally, although we were all scared, everyone handled everything pretty well and we started to make progress.  The kids, who had been with Nancy in Malden for all this time, came to visit and then Nancy & I took them to Columbia on Thursday, May 11, to help Adelaide get ready for her dance recital that weekend.

I returned to Poplar Bluff on Saturday and Sarah was released from the hospital on Sunday, May 12.  We drove to Columbia very slowly and talked through the news, the scenarios, and the fears.  Two stories I’ll always remember from that conversation – talking about the randomness of events and how things could be different, and I point out that we all could have been in a car wreck on the way to Malden.  (Didn’t go over very well.)  The other was Sarah very vividly pointing out that she wanted to live to see Adelaide go to kindergarten, to see Jack start walking and talking, etc.

From there, we were back in Columbia and begin learning much more.  It finally hit me that we weren’t talking about carcinoma, but carcinoid, so I became much more educated and we started to investigate options both in Columbia and elsewhere.

One of our first stops outside of Columbia was with Dr. Lowell Anthony in New Orleans.   We went down there in June 2006.  Dr. Anthony gave us a pretty grim prognosis.  There was too much tumor in Sarah’s liver for them to do anything surgically, so he’d recommend some other treatments.  His main goal would be to give Sarah five more years, continuing to reevaluate everything as we went.  This was a similar story to what the surgeon in Columbia had told us.

Already scheduled, we also took a trip to Baltimore to visit a surgeon at Johns Hopkins, Dr. Michael Choti.  One of the best things to happen during this was Dr. Choti’s insistence on looking at new CT scans, which we had done at Hopkins.  Those new scans showed significant changes in Sarah’s liver, with reductions in tumor load everywhere – or maybe the initial scans were just not very good – or a combination.  Regardless, we were given a significantly different prognosis then.  Choti also recommended against surgery, but for different reasons than we’d heard previously.  Based on the first scans, the first doctors believed Sarah’s liver was too involved to be helped surgically, basically.  Based on the new scans, Choti believed that the tumors were scattered enough that he wouldn’t be able to get them all out, but they were also small enough to not cause significant concern in the short-term.  This was very good news.

Over the next two years, with the good help of our local physicians, we monitored every sign and scan extremely closely.  Sarah attended two national carcinoid physician-patient conferences and I accompanied her on one.  We continued to read everything we could and learn whatever we could.  Throughout, the tumors either remained consistent or slightly smaller, and the advice from national experts was surgery was the only cure, when you could go in and remove the tumors you should do so.

In the spring of 2008 our local surgeon, who we had only seen that one time in 2006, reviewed the case again and informed us that he now believed he could go in and remove all of the tumors.  All of them.  While skeptical and nervous, we proceeded with some initial testing and began seriously considering surgical options again.  Ultimately, we decided to visit again with the New Orleans group for their opinion, this time visiting Dr. Eugene Woltering.  At that visit, in May of 2008, we met with both Dr. Woltering and Dr. Philip Boudreaux, the surgeon who would be operating.  They reviewed everything we were asked to bring and recommended surgery on Sarah’s liver, probably removing lymph nodes also, and exploration from there to find/remove any other tumor they could.  We ultimately scheduled this surgery for June 26, 2008, at Ochsner Medical Center in Kenner, Louisiana, just outside of New Orleans.

While we were both nervous about the surgery, it fit the plan that we’d heard all along.  Absent the stuff just disappearing on its own, which had always been Sarah’s hope and one I now wish we’d have given more time, whenever someone could go in and remove the tumors, that would be the plan.  Although I’ve had people tell me they think Sarah knew this was coming, I simply don’t believe it.  If for no other reason than she’d have never willingly left the kids.  Never.

The afternoon of June 26 brought extremely good news.  Dr. Boudreaux and Dr. Yi-Zarn Wang performed the surgery and were clearly pleased with the results.  They had removed absolutely everything they could find, didn’t really find as much as they had expected to, and all signs for a recovery were very positive.

There were considerable peaks and valleys while we were in New Orleans.  But, things looked good enough that Nancy & Bill took Adelaide & Jack back to Malden and Sarah’s parents and brother each returned to Columbia for brief periods, as we were all confident she would be home soon.

Ultimately, of course, things changed.  I’ll say I woke up the morning of July 7 still believing she was coming home.  My belief, based just on watching things in New Orleans daily and watching Sarah recover from two births and the previous major surgery, is this:  Sarah recovered more slowly than people expected.  That was partly due to her requiring more pain medication than normal.  The first day or two, she was unable to take deep breaths because of the pain, which was never under control.  Ochsner had (may still have, I don’t know) extremely limited ICU visiting hours, which made the situation worse.  The minute I saw Sarah the next morning I knew she was still in pain, information the doctor did not have.  Despite getting the pain under control, Sarah had likely already developed lung problems, very likely including an MRSA infection at that point.  Whether MRSA was in play at that point, it definitely was later in the week.  She was moved off the ICU floor for one night, but breathing problems became considerably worse over time.  Those breathing problems continued to worsen, no matter what efforts were tried, until we lost Sarah on July 7, 2008, at the age of 36 years and 1 month.  She died in the early afternoon and I was with her pretty much that entire day, or at least as close as I could be considering the circumstances.  Sarah’s Mom & Dad were also in and out as much as was feasible.

Sarah’s mom, dad & I returned to Malden immediately, arriving early the morning of July 8.  I went to bed with the kids and told them the news after breakfast that morning.  I called as many of Sarah’s friends as I could manage and responded to text messages and emails as we drove from New Orleans to Malden.   The outpouring of love and support was genuine, generous, and unbelievably widespread.  Everyone was in pain and missing Sarah.

Adelaide was 5 at the time, just preparing to enter kindergarten that fall.  A very bittersweet thing, given the car conversation earlier.  Jack had just turned 3.

From then until now, the kids only speak of missing mom, of things she liked or the way she would do certain things.  I fully believe Adelaide is trying to protect me, much as I’m trying to protect her.  I think Jack just misses his mom, but doesn’t understand the whole thing.  They’ve neither one never had a break down, although I almost wish they would.  The same could be said of me, however, minus an hour or two in the hospital in New Orleans.

With perfect hindsight, of course I’d be vehemently opposed to that surgery now.  Sarah was on course to be perfectly fine for another few years at least.  On the drive to New Orleans we discussed how we’d made it to seeing Adelaide start kindergarten; this surgery was to make sure we saw the kids’ children start school.  But, given everything we knew to be true and the considerable advice from considerable experts we heard everywhere we went, the decision to have surgery was sound.  It just turned out wrong wrong wrong.

The story isn’t complete without mentioning the continued outpouring of love and support and tributes to Sarah that has occurred throughout the ordeal.  From people taking care of us immediately after the diagnosis to the numerous memorials and tributes that continue to happen, it is clear that Sarah did win, as I’ve always labeled these posts.

Traffic Light

Was driving home from CDC yesterday with Jack when we pull up to a traffic light similar to this, at which we’ll turn right. After explaining to him what insurance for the road is all about after hearing a commercial on the radio about Van Insurance from £149.

Jack says:  “That light has two arrows.  One pointing this way, which is to our house.  The other points up, for spaceships.  Some spaceships land on the road and fly up into the sky.  Some spaceships are strong and fly up in the sky.  Sometimes spaceships don’t fly, they just stay on the road.  But some cars are strong too.  The strong cars just run over those space ships.  Boom, vroom, crash, boom. vroom.  Our truck is strong.  Boom, vroom, crash vroom.”

Watch out for spaceships.

Winter blahs are definitely here.  Understandably hitting me substantially harder than normal.  Like most businesses, including ours here, I’m down for the year.

Boredom, sadness, and general ugh rule the night, the days take care of themselves.  First parent-teacher conference at Adelaide’s school is tonight.  She got all pluses and checks on her first report card.  Seems to me like smiley faces were a better way of rolling.

After saying for weeks and months that there was no way I was going to Ames, Iowa, in November for a football game, I committed to doing exactly that last weekend.  But now it looks like the other is no longer interested, which should be fine.  Except now I’m all interested in going.  Drive up solo would even be OK, just drive back that would likely suck.  I’d really like to get hooked up with a sideline pass and just watch the whole game down there, whilst I’m wishing.

I ate lunch at the country club yesterday, next to a table of old timers who were discussing football.  “The reason they win so many games these days is because the schedule is so bad.  Yeah, and because they play more games.  We should play Arkansas and Iowa every year.  We played Illinois, but they’re not any good this year.”

Mizzou did play Arkansas last year, destroyed them.  Arkansas and Iowa are both bad this year.  The bad Illinois team Mizzou did beat this year beat the Iowa team that we evidently need to play to improve our schedule.  Maybe the reason Mizzou wins so many games these days is because they’re freaking good.   Winning is hard, enjoy it.

So seems more likley I’m driving to Ames now, doesn’t it?

Later this week I’m mailing a check to POYi for $2,786.77 — the profits thus far from Hold That Hug photo sales.  In addition, three people contributed directly to POYi in payment for their photos, for an additional total of $225.  So, thus far, $3,011.77 raised from 76 orders.

That order number represents about half the number of families participating, so hopefully another $3,000 or so still to come.

I wish donations could have been given directly to POYi by those ordering, instead of being funneled through my bank account, but will continue to provide updates as I can for transparency and because I know there are people interested.

Once again, thanks to all involved for their efforts on the event, which continues to be a fine tribute to the organizers and to Sarah.

The end of football season is rapidly approaching, with the final home contest here.  Our beloved Tigers take on the purple Wildcats from K-State, in our annual it’s surprisingly cold game.  Just in time for the purple camos and crazy radio toting k-state fan guy.

Game time is at 6:00 pm, broadcast on Fox Sports.  After telling us to wear gold all year, we finally are allowed to wear the slimming black for this week’s Blackout Game, which will look great under the bulk of our puffy coats.  Between the cold and the late start, we’ll probably have slim tailgating also.  A few people, a few drinks, just a few hours pre-game, I’d imagine.

I say it every year, but go in the game by 5:30 and give the seniors a clap.  Not in an old lady in Austin kind of way, but in a this is arguably the best Mizzou football graduating class in history kind of way.  They’ve won more games than any class in history and will go to as many bowl games (4) as any in history.  While those could be partially signs of the times, you’ve got Chase Daniel and all that everyone already knows about him, Chase Coffman – who has caught more passes than any college TE ever, Jeff Wolfert — likely the NCAA’s all time most accurate kicker, William Moore, clearly the best player ever from Hayti, two former walk-ons who are now long-time starters, and so on.  Three of them have already graduated, with all but one scheduled to graduate yet this year.  I’m sure he would have, but he spent time in Iraq as part of the Army Reserves.  And even beyond all that, it would have been Aaron O’Neal’s senior day as well and the team will honor him.  The full senior class is listed below.  To them, I say thank you.  I also say I wish Sarah was down there for senior day taking pictures of you & your family.  That was a part of the season that she always enjoyed.

This will also mark the final time we see K-State coached by Ron Prince, who was fired earlier this week.  The K-Staters are allegedly thinking of bringing Snyder out of retirement, which should bring great pleasure to the old jokers that sit around us.  Will also bring great pleasure to me, as I remember his last few teams being bad and don’t believe that would change much.  Prince is a freak, by all reasonable indications.  He made his players run at 3 in the morning after a loss, makes them hold arms and shuffle on and off the field together before, during, and after the game, stomps around the sidelines like he’s wearing cement blocks for shoes, and has somehow beat UT twice.  I’ll shed a tear whilst we destroy them.

Finally, go big red, for a day.  And screw ku.

Tiger Seniors (Jersey #)

• Van Alexander (5)    LB    Columbia, Mo.
  Has 93 career tackles in 37 career games
• Mack Breed (24)    S    San Antonio, Texas
  Has contributed on special teams and on defense
• Castine Bridges (21)    CB    Richmond, Calif.
  12 starts, 99 tackles, 6 PBUs in 2 years as a Tiger
• Colin Brown (61)    OL    Braymer, Mo.
  Originally a walk-on who has started 23 games on OL
• Adam Casey (28)    WR    Chesterfield, Mo.
  Respected walk-on who has been out w/injury in 2008
• Tommy Chavis (48)    DE    Orange, Texas
  Productive player over 3 yrs., 12 TFLs, 7.5 sacks, 4 FF
• Brock Christopher (34)    LB    Kearney, Mo.
  MU’s active career leading tackler with 294 stops
• Chase Coffman (45)    TE    Peculiar, Mo.
  NCAA FBS alltime leading pass-catching TE (230 rec.)
• Chase Daniel (10)     QB    Southlake, Texas
  Record-shatterer was MU’s 1st-ever Heisman finalist in ‘07
• Justin Garrett (8)     S    Baton Rouge, La.
  Hard-hitter has started 18 games over 2 yrs.; 114 tack.
• Earl Goldsmith (7)     WR    Denton, Texas
  Versatile offensive talent has played TB, WR and KR/PR
• Ziggy Hood (94)        DL    Amarillo, Texas
  Needs 1 more sack to reach #10 on MU career top-10
• Jimmy Jackson (1)    TB    Caruthersville, Mo.
  Mr. Touchdown has 14 career TDs, 807 rushing yds.
• Ryan Madison (76)    OL    Bethany, Mo.
  Has most active career starts among MU O-Line (31)
• Zach Milligan (59)    DL    Hardin, Mo.
  Staff Sergeant in Army Reserves is an inspiration to all
• William Moore (1)    S    Hayti, Mo.
  10 career INTs ranks 6th-best in MU history
• Aaron O’Neal (25)    LB    Creve Coeur, Mo.
  Was lost on July 12, 2005; His memory lives on at MU
• Chase Patton (14)    QB    Columbia, Mo.
  Has passer rating of 147.31 in 2008; 15 gms. played
• Steve Redmond (18)    LB    Kansas City, Mo.
  34 games played; 17 tackles, 1 PBU & 1 forced fumble
• Tommy Saunders (84)    WR    Kearney, Mo.
  Ranks 9th on MU career receptions chart (119)
• Stryker Sulak (38)    DE    Rockdale, Texas
  18.5 career sacks ranks #4 on MU career charts
• Tru Vaughns (11)    CB    Patterson, La.
  Sparkplug has 33 tackles, 2 PBU so far in 2008 season
• Jeff Wolfert (99)    PK    Overland Park, Kan.
  On pace to set NCAA accuracy mark for combined kicks

I’m downstairs paying bills in the dark tonight, which is a pretty good way to pay bills really, when I hear Jack crying.  I run into him on about the third stair, he says he wants me to come lay down with him.  Adelaide is asleep and the movie is over.  (This is a change, normally he starts screaming “Daddy!  Daaaaddy!” the minute Adelaide falls asleep.)

We go lay down and he starts talking to me.  I tell him I wish his mommy was here, he says he does too.  “Where did mommy go again?”  I ask if he remembers her going to the hospital, he does, he says she died, but “Where did she go?”

I tell him she’s in Heaven.  “Where’s Heaven?”  I mention the stars and sky and say I believe she can come around us still, we can talk to her, maybe she can talk back to us, and maybe she can come visit us in our dreams.  “Yeah,” he says, “and I can hold her cheek.”

For as long as I can remember, Jack uses “hold your cheek” as a source of comfort.  Might reach up during the night, certainly while falling asleep, or just between bites of a PB & J sandwich, and put his hand on your cheek for a few seconds (or minutes).

I ask if she visits him in his dreams, he mentions holding her cheek again.  I ask if he’s held her cheek lately, “Yeah, downstairs on the couch, when I watch a movie.”  Which happens every morning and afternoon.  No matter whether current or memory, it makes me feel good that he remembers her and remembers her as a source of comfort.  Makes me cry too, of course, but am glad he remembers.

The kids & I took a trip that Sarah & I had started planning a year ago or better, to Waco for the MU-Baylor football game and to visit friends and their children.  It was a good trip.  I was apprehensive about the all day travel each way, but there were no major issues.  The luck of returning on the day we turned the clocks back an hour helped a ton, although I was sad that I made the kids miss their school Halloween stuff.

All in all, the trip was better than I expected.  The kids love that group of people, as do Sarah & I of course, so much fun was had.  We were able to trick or treat in nice weather, which was odd, but saw a festive scene in that neighborhood.  JT fell asleep before we were finished, but the girls kept going well into the night with a memorable (long and loud) serenade trying to attract trick-or-treaters to the end of the cul de sac.

The football game was a good game, since we won, and the Baylor fans are of course very nice.  Someone had the audacity to give us a “thumbs down” after the game, only to be immediately scolded by the rest of his group.  A bit different than the drive by shoutfest in Austin.

The better than I expected part, though, was really no one having any real breakdowns, myself included.  At least 8 people in Waco that Sarah thought very highly of, so it’s a tough group to be around in a lot of ways…. especially in leaving that group.  I’m not sure whether to take it as a sign of progress or a sign of sadness that I was able to leave without having some panic.  Progressive sadness, I guess.

MU Basketball season unofficially starts this week.  I’m expecting a bit of a reliving of the early football season stuff, as there were routines to basketball season too.  Primarily, Sarah sat in exactly the same spot for each game for the past many years.  I feel bad for those that sit on either side of her, as they will feel that missing too, I’m sure.

Finally, I’ll be glad when elections are over tomorrow, if for no other reason than I’m sick of people telling me how they’re going to vote.  If I wanted to know, I’d ask you.   Also curious to see if all the “We Support Our Commander in Chief” signs that still fill some yards come down when “our” becomes someone they don’t like.