The Un-Special One

I'm no Jose Mourinho, but I've taken on the head coaching duty for our older son's U8 team this season.  I already told you about my playing experience.  As far as coaching experience, I ain't got none.  But I do watch a lot of soccer on TV and yell at the players to pass, shoot, and defend.  And I have managed teams on internet fantasy leagues.  It's the same thing, right?

As if my car trunk doesn't have enough stuff, it's now has a big bag of soccer balls, cones, and pinnies (for the uninitiated, these are brightly colored practice vests).  Because my trunk lid could still close, I got a couple of collapsible goals for practice.

I did buy a coaching book.  Picking one was really confusing because every person who has ever coached a youth team has also written a coaching book.  First, I eliminated the ones on Dutch methods because I don't know the difference between Holland and The Netherlands.  Sure, "total vootball" may be the way to go in the long term, but all those double vowel names (Ruud van Nistelrooy, Pierre van Hooijdonk, and Antonie van Leeuwenhoek) are hard to pronounce.  Second, I eliminated the books with a three-digit number in the title (101 Great Youth Soccer Drills, 300 Soccer Drills, The 101st Airborne at Normandy - I thought that one was about French heading drills).  By the time all the kids get to practice, we barely have time to run two of the four drills I planned and I can barely keep those four in my head.  What am I going to do with 97 more?  Finally, because Borders was about to close, I picked the cheapest one.

Six of the kids from last season are returning.  This is a relief, because it took me all of last season to learn their names.  Now I only have to learn four new names.  The returning kids are an enthusiastic bunch and know the rules and the positions.  Whether or not they stay in position is another thing.

U8 kids play 6 v 6, including the goalkeeper.  So I have to figure out whether to go with a 2-2-1, a 2-1-2, a 1-2-2 (for when we're behind), or a 3-1-1 (for keeping a lead), 1-3-1, or 1-1-3..  But it's U8 soccer.  Whatever formation they start with will end up as a 5-0-0, 0-5-0, or 0-0-5.  And then I have to hope that whoever plays goalkeeper doesn't get bored and start playing Spiderman with the net.  This is the leading cause of "goals against" in U8 soccer.  I'll have to appoint a parent as goalkeeping coach, whose sole duty will be to shout "You're doing a good job. Stay on your line. Way to go!"  Praise-correction-praise. (from the coaching book).

My proudest moment last season was when our son ran into the goalpost.  It wasn't the fact that he ran into the post, but why he did it.  He was on defense and the goalkeeper, channeling his inner Fabian Barthez, had gone off to the far extremes of the penalty area.  Our son, without instruction, sprinted across the end line to cover the goal, while keeping his eyes fixed on the ball and... thunk... ran into the post.  His chest absorbed most of the collision and he popped right back up (note to self: get a first aid kit with ice-packs).  Yeah, he ran into the post, but he was doing the right thing without being told.

Oh, the league gave all coaches a handout and a 10 minute talk on concussions.  Symptoms include inability to focus on a task, unresponsiveness to simple questions, and disorientation.  In other words, typical eight year old boy behavior.

So here I go, planning practices, running drills, and trying to organize eight year old boys.  This might be the longest eight-game season ever.  But, at the end, you'll be able to read all about it in my forthcoming book Water Breaks and Post-Game Snacks: The 101 Essentials of Yoouuth Soccer. Hey Joe Doc, can I get a cover endorsement from you?

A Bottle of White, A Bottle of Red. Perhaps a Shot of Neupogen Instead

I had a shot of Neupogen to boost my low white blood cell counts.  Objecting to their declining status, a small percentage of the white cells on my right side, claiming to speak for all the white cells, formed a T (cell) Party and (1) asserted that the red blood cells did not come from my bone marrow, but from a transfusion, (2) that my therapy was determined by a cell death panel, and (3) that synapses between two cells with Y chromosomes is an abomination.

The Neupogen shot will keep my white cell, specifically neutrophil, counts up to fight obligate and opportunistic pathogens.and to stay on schedule for the next round of FOLFOX this Tuesday.  Here's a neat time lapse video * of a neutrophil ingesting Candida albicans (yeast.  No, not the beer making kind).

The Neupogen shot was administered by the English nurse.  So we talked about the upcoming World Cup and I mentioned that England would advance, but only after losing the the United States.  She gave me the evil eye and I said "I shouldn't have said that while you're holding a needle."  But she'd already given me the shot.  Next time I see her though, she might use an 8-gauge needle to inject me - in the eye.

I know the Neupogen is working because I have a backache - a common side effect.  Other, more adverse effects include splenic rupture, alveolar hemorrhage, acute respiratory distress syndrome (ARDS), and hemoptysis - Greek for "coughing up blood."  What's Greek for "Hey Angela, loan us a few billion Euros?"

*  Judith Behnsen, Priyanka Narang, Mike Hasenberg, Frank Gunzer, Ursula Bilitewski, Nina Klippel, Manfred Rohde, Matthias Brock, Axel A. Brakhage, Matthias Gunzer.  PLOS Pathogens

FOLFOX Round 3: We Are Experiencing Technical Problems

I have to undergo 12 rounds of FOLFOX in all.  If you're thinking "Hey, that sounds like a boxing match," you're right.  Boxing, for those most of you under 30, is how trained professionals beat each other senseless before there was mixed martial arts.  Unlike MMA, a boxing match does not happen in a cage.  I suspect MMA uses cages because all the fighters look like criminals.  Have you seen these guys?  A bunch of tattooed skinheads beating each other up. Sounds like English soccer fans.  Umm.... where was I?

Oh yeah, the hyper-extended boxing analogy.  In the first few rounds of this bout, you take a few punches, but it's not that bad and you recover quickly between rounds.  It's the stage where you're feeling out your opponent.  In the later rounds, your opponent learns your weaknesses and gets more aggressive.  You take more blows and take longer to recover.  In the final rounds, your opponent is going for the knockout.  You get knocked down each round and need a standing eight count.  In the end, you've endured 12 rounds against a tough opponent, you've taken all of his punches, but delivered none of your own.  You got knocked down but you get up again.  Somehow, beyond all reason, the judges declare you the winner on points.  See, like boxing, the match is fixed.

So the round started the usual way, three hours in the infusion room.  No problems with the port this time, the blood return was pretty good.  My blood cell counts were on the low end of normal last week.  This week they're beginning to drop out of the normal range.  So my oncologist wants to keep an eye on them, to see whether I need corrective action.  That means shots of Neupogen or Neulasta (G-CSF or pegylated G-CSF respectively).  Maybe, if my red cell counts drop too, I'll get erythropoietin (Epo) and compete in the Tour de France this summer.

Tingly fingers started pretty quickly and even a cold-ish room is enough to precipitate this side effect.  Although the weather warmed up, the ground is still cold and so are the water pipes.  So I need to remember to let the tap run for a while on warm before touching the water.  Or, I could stop washing my hands and showering.

This round came with technical problems.  The 5-FU continuous infusion pump is supposed to run about 48 hours.  So, when I left the doctor's office on Tuesday afternoon, I expected to return on Thursday afternoon for the pump to be disconnected.  Well, Wednesday night, at 11:30, the pump alarm signaled that the reservoir was empty.  So, I got up and took the batteries out of the pump (the nurses lock out the controls) to silence the thing.  I went to the office on Thursday morning to figure out whether (1) I didn't get enough volume to begin with or (2) the flow rate was faster than usual.  Either would account for the early empty signal.  Turns out that the reason was (3) a buggy pump.  The reservoir was not empty, but the silicon brain thought it was - it must be running Windows XP. So the nurse reset the pump to deliver the rest of the dose and I returned at 5 PM, when the reservoir was really empty, to have it disconnected. I suspect that the real reason for all of this is that the nurses wanted to see me twice in one day.

FOLFOX Round 2: I Am Such An Idiot

The second chemo treatment didn't start too well.  My port seemed to be clogged and the nurse couldn't get any blood return.  After three syringefuls of the anti-coagulant heparin and having me sit completely still and quiet, she worked it loose.  I suggested drano, but she didn't think it was a good idea.  I've never had trouble with the port before and hope it's a one-time thing.

I am such an idiot.
Before this set of treatments, my oncologist warned me about the cold sensitivity side effect of oxaliplatin, with which I would get a strong tingling sensation if i touch or eat something cold.  The next week, during a chemo-education session, the physician's assistant repeated the warning.  At the first chemo session, the nurse reinforced the lesson when she connected the iv bags and another nurse repeated it when she disconnected them.  By the third and fourth time, although I politely listened, i was thinking Yeah, yeah.  I know this stuff.  Well, Mr. I-know-this-stuff completely forgot the lesson two weeks later.  On the night of the second treatment, I took our younger son out for ice cream.

When I realized what a dope I was, I decided to experiment.  After all, I already paid for it (literally and figuratively with a frozen throat), so why not do some science.  It turns out that with the first spoonful, I felt nothing.  With the second, I felt a little tingling and the sides of my tongue were starting to freeze.  With the third spoonful, my tongue felt very frozen and I couldn't eat any more.  After waiting about two minutes, the sensitivity was gone and the three-spoon cycle reset.  So there you go: Effects of Cold Stone Creamery's Berry, Berry, Berry Good Flavor on a Patient with Oxaliplatin-Induced Peripheral Neuropathy is submitted for publication.  By the way, since when did going out for ice cream become an "experience," where the creamwright behind the counter kneads your ice cream and additions on a cold marble stone?  Whatever happened to just scooping the ice cream out, giving it to the customer, and charging a reasonable price?

Anyway, the cold sensitivity lasted longer this time.  As late as Friday I had trouble drinking cool water.  Then, on Saturday, the fatigue crept in on little cat feet.

Soccer note: Our older son is now playing FIFA 10 and proving that DC United can win with last year's roster.  Jaime, Gomez, and Emilio are scoring in bundles.  When he plays as the US National Team, even Jay DeMerit gets in on the scoring.

March Madness

Madness:Pronunciation: \ˈmad-nəs\.  Function: noun

1: the quality or state of being mad: as a : rage b : insanity c : extreme folly d : ecstasy, enthusiasm.
2: skipping your colonoscopy.

March is Colon Cancer Awareness month.  I will repeat my request for you to get your colonoscopy* over with.  If you are under 40, tell your parents to get the procedure.

Look.  This is not hard.  You have to "prep" the day before, meaning that you forgo solid food and drink a laxative that induces diarrhea.  If you've ever had food poisoning or an intestinal virus (a.k.a. the cruise ship trots), then you've had far worse diarrhea than you will with the prep.  The day of the procedure, you show up, have an i.v. inserted, make butt jokes with the nurses, make drug jokes with the anesthesiologist, fall asleep, and then wake up later.  That's all there is.  You don't see the camera going up your butt and you certainly don't feel anything.  You can reward yourself with a big lunch afterward.  Consider it a diet holiday and eat heartily.

Are you afraid of what they'll find?  In the overwhelming majority of cases they find nothing.  I know what you're thinking, "But they found something in you."  Truthfully, there's an extremely small chance that they'll find something.  But it's better to find out early, when you have no symptoms, than later, when you're in pain and bleeding.  Polyps in the early stage can be clipped right then and there.  Look, here are the survival rates at five years after diagnosis.  The numbers are from multiple sources, hence the range.

Stage 0: ~100% (pre-cancerous polyps)
Stage 1: up to 95%
Stage 2: ~80%
Stage 3: 40-65%
Stage 4: 8%

What are you waiting for? Get off your ass and have it looked at.


*  I know the guidelines recommend colonoscopies for those over 50, not 40, but I can't be impartial because I'm 43, younger than the recommended age.  Talk to your doctor as there are other screening options.

If You Give A Mouse A Cookie...

If you give a mouse a cookie, he's going to ask for a glass of milk
Laura Joffe Numeroff, If You Give a Mouse A Cookie

If you give a scientist some data, he's going to graph them.

Gracias a mi amigo madrileño for graphing the CEA levels.  Some of you are asking, "Where are the controls?"  Well, this is a case study, no controls and n=1.  But we'll still write five paragraphs of conclusions, won't we.

I searched PubMed to find correlations between CEA levels and prognosis.  The most recent paper (from Korea) concluded that patients with a decline in CEA levels after surgery fared somewhat better than patients who did not.  The study included 352 patients. It's unfortunate that, with an estimated 100K new cases of colorectal cancer per year in the US, there is no large, accessible database to capture simple clinical data for estimating prognoses - but that's a rant for another time.

I have a stack of printouts from all my blood work, going back to July.  Maybe I should send them to Madrid and we'll get really nice graphs of my blood counts, hemoglobin, etc.

FOLFOX Round 1

The first FOLFOX treatment started Tuesday and ended Thursday.  I reacquainted myself with the infusion pump and the little tricks about how to wear it and where to hang it when I sleep or shower.  Overall, this first round went well.  I had just a little of the cold-sensitivity.  My fingertips tingled a little on Tuesday evening, when I took off my gloves outside to make a phone call and again on Wednesday morning in the cold hallway at work.  Yes, I finally put in a full day of work, but I was exhausted at 3:30 PM.  The cold sensitivity didn't last all Wednesday.  I expect that to change, since the side effects can be cumulative.

To pre-empt the nausea, I'm on anti-emetics.  I get i.v. Emend during the infusion (day 1) and take it on day 2 and 3 in the morning.  I also take Kytril in the evening.  With each dose of the enti-emetics, I take dexamethasone to enhance the effect.  Dex is a steriod, so if I start breaking my keyboard, I may have to take a drug test.  I'm not sure how that helps the Emend and the Kytril.  Any pharmacologists out there?

I still have the back-up drug Prochloper, in case I still feel nauseated.  But they steered me away from the Lorezapam.  Lorezapam is the generic for Ativan, the one that gave me hallucinations in the hospital.  It's better that I stay off that.

Chemo II: Return Of The Pump

5-FU is back and he's brought some friends!

I'm about to start the next set of chemo.  There are 12 treatments in all and each lasts three days.  This regimen differs from the previous in a couple of ways: I'll be on three drugs instead of one and the treatment will be for two days every two weeks instead of five days per week.  On day one, I'm hooked up to my old friend, the 5-FU continuous infusion pump.  I'll also get an leucovarin and oxaliplatin infused over three hours.  On day two, I'll continue to wear the pump and on day three it will be disconnected.  I should be finished in mid-July.  Here's more on the drugs:

• 5-FU (5-fluorouracil), which I was on last time, inhibits RNA and DNA synthesis.
• Leucovorin is a derivative of folic acid.  It enhances the effect of 5-FU and prevents neural tube defects in developing embryos (another way colon cancer is like pregnancy).
  
• Oxaliplatin also inhibits DNA synthesis, maybe by alkylating the DNA (the FDA approves drugs based on efficacy, often without knowing exactly how they work in vivo).
  

Oxaliplatin has some miserable side effects.  There's the run-of-the-mill stuff, nausea, diarrhea, reduced white blood cell counts.  Then there's the neuropathy. I'll have an extreme sensitivity to cold, such that I won't be able to take anything out of the refrigerator without wearing gloves.  I shouldn't take things out of the fridge anyway because if I ingest something cold I'll feel like I'm suffocating.  Then, as the weeks go on, I'll start losing the feeling in my fingertips and toes.  I'll have a hard time buttoning a shirt, tying my shoes, and doing other fine motor skill tasks that we take for granted.  Basically, I'll fail a field sobriety test without drinking.  Another side effect is hearing loss.  So, if I were to have a field sobriety test, I wouldn't even hear the policeman's instructions.

I've been a little disappointed in my therapy so far - not the efficacy, but its age.  5-FU, radiation, and surgery have been used against cancer since the 1950's. In practical terms, this is like driving a car with manual windows and door locks, no A/C, and an AM radio (in other words, Pasco, like your last rental car).  Sure, it will do the job, but it's boring and unsexy.  Other cancer patients are getting interferons, interleukins, and things that end in "mab" and "ux," while I was getting grampa's chemo.  Oxaliplatin, however, was approved in 2002.  So, finally I'm getting a 21st century drug.

Declining Numbers At An Even Rate

Bonus points for knowing the song reference without using the interweb.

Before I get to the numbers, let me get this off my chest (literally and figuratively). I HATE TAPE!  I mean the surgical/medical kind.  Apparently, though, nurses and phlebotomists get AIG-type bonuses tied to the number of rolls of tape they use per year.  At my last blood draw, the lab tech used three five-inch strips of tape on my forearm: one strip to hold the tiny wad of gauze in place and the other two to hold down the first.  In the hospital, the nurses taped down the i.v. line to withstand a category 5 hurricane. And when I'm on the chemo pump, the needle going into the port is secured to my chest with a rectangular 3M Tegaderm bandage (duct tape relabeled for medical use)  that is then held in place by, guess what, more freakin' tape.  It's no surprise that now, four weeks out of the hospital, I'm still finding sticky bits of tape adhesive on my skin.

Why am I complaining about this?  Because I have hair on my arms and chest (and you wonder why I need more percocet).  Now I'm not one of these metrosexual guys who shave their bodies, but when I start chemo again, I'll have to shave my chest to minimize the tape damage.

OK. Rant Over.

The aforementioned blood draw was at my most recent visit to the oncologist.  In addition to the usual blood counts, they tested my carcinoembryonic antigen (CEA) level.  CEA is a protein that is present in very low levels in healthy people (5 ng/ml or lower is considered normal).  In colorectal and other cancers, CEA levels are elevated.  So physicians use these numbers to gauge how well the treatment is working.  Here are my CEA scores since this thing started:

Pre-chemo/radiation (August 09) - 64
Post chemo-radiation (October 09) - 12.9
Pre-operative (December 09) - 2.5
Post-operative (February 10) - 1.2

So I've been back in the normal range since December.  This confirms the results from the CT and PET scans.  Did I mention how much tape the radiology techs used for the i.v. lines?

"If there's anything I can do..."

Many of you have made generous offers of support.  I will now take you up on them.  There is something you can do - take care of yourselves. 

Today, February 4, 2010 is World Cancer Day.  So, for those of you over 40, it's a good day to make an appointment with your doctor to get a mammogram and/or a colonoscopy (guys, just get the colonoscopy).  I know this may not be what the guidelines recommend, but I can't be objective about this.  After all, I became a cancer patient at 43.

Call your doctor and check with your insurance company for coverage.  Don't be a wimpy.  One colonoscopy every five years is not a hard thing to do for your health and your family's peace of mind.  If you're reluctant to do it, just think of what I've been through: two colonoscopys, two CT scans, two PET scans, chemotherapy and radiation, and one surgery in six months.  If I can go through all of that, surely you can get one test.  Look, when you have cancer, people call you "brave" and a "fighter" and all sorts of encouraging labels.  But I really don't want you to join this club. The dues are too high and T-shirts aren't that great - they're one-size-fits-all, they open down the back, and you can't keep them.

And I'm not the only one asking you to do this, Dave Barry is too.