FOLFOX Round 12: "I hold in my hand the last envelope."

Remember Johnny Carson's Karnac the Magnificent sketches and how the crowd would applaud in mock relief when Ed McMahon gave Johnny the last envelope with the corny set-up to the punchline?  Well, that's sort of what I feel like (relief, not corny).

So this is it.  The last FOLFOX treatment.  I may be done with chemo, but it's not done with me.  My fingers and toes are still numb and my taste buds are still not functioning properly.  The side effects will fade over the next four weeks and, I hope, none will become permanent.  Do I celebrate?  Not really, I'm too tired and no food tastes good to me. In a few weeks, when I have my energy and taste back, I may go out for a ribeye and a beer.  In the meantime, everyone else should have a drink and some cake to celebrate. - and strippers.  Everyone should have strippers in the kitchen.  What?  They're  good for getting the leaves off sprigs of rosemary and thyme.  Rosemary and Thyme aren't good stripper names, like Ginger and Cumin.

Where was I?  Oh yeah, If you recall, the whole thing started on July 22, 2009, when I was diagnosed with an adenocarcinoma of the rectum.  It's been a bumpy ride since then.

28 radiation treatments
12 FOLFOX treatments
two colonoscopies
two PET scans
two CT scans
too many digital rectal exams
one major surgery
one unnecessary trip to the ER
lots of percoset and oxycontin
one really sweet morphine drip
one episode of Ativan-induced hallucination

eight (at least) oncology nurses
four oncologists (primary, radiation, consulting, cousin-in-law)
four anesthesiologists
three primary care physicians (my regular doc is usually on vacation when I need an appointment)
three physician's assistants
three surgery residents
three radiologists (two for the scans, one is a college friend)
two radiation technologists
two gastroenterologists
too many phlebotomists
one surgeon (you really don't want more than one person knifing around down there)
one ER physician
A whole bunch of other medical personnel who have seen me naked from the waist down

Thousands of blog hits
Dozens of supporters
Several readers, co-workers, friends, and relatives who scheduled colonoscopies (and some who still need to do that)
A few new comrades also in the fight
One who succumbed

The number  I'm looking forward to now is zero, as in zero spots on the next CT scan.

FOLFOX Round 11: I'm Running Out Of Subtitles

I just realized that I haven't posted anything about Round 11, which was two weeks ago.  There's nothing much to write about it.  I was taken of Emend (one of the anti-emetics).  The protocol is an infusion of Emend on day 1, followed by Emend tablets on days 2 and 3.  However, in about week four, I forgot to take the Emend tablets and, since I wasn't nauseous, I decided to stay off them.  The fewer drugs, the better is my creed - unless we're talking about narcotics.

In treatments 5-10, the nurses have asked if I had my Emend prescription.  I told them each time that I do, but I don't take it.  Finally, in week 11, one of the nurses figured that since I've been breaking protocol for months, she would take me off the d1 Emend infusion.  Fine with me, if that and the associated steroids are eliminated, it cuts an hour off the infusion time.  I really don't want to spend more time than necessary in the infusion room.

No new side effects to add.  I have the same old problems, they just last longer.  I had figured to lose my fine motor skills, but I didn't.  I'm still able to button my shirts, even those ridiculously tiny buttons on the collar,and I was able to build this:

LEGO Droid Trifighter

I haven't tried to tie my shoes lately, because I wear sandals to go out of the house.  It's 100 freakin' degrees out, I'm not wearing tennis shoes or Adidas Sambas, and I'm certainly not wearing these, not matter what Clint Dempsey says.

Yours for the low, low price of $339.99.

Whatever happened to black soccer boots anyway.  These days, the stars are wearing yellow, orange, and lime green ones.  If you're going to wear fancy-schmancy shoes, you'd better score lots of goals.  Hear that, Messrs. Rooney, Ronaldo, and Messi?

FOLFOX Round 8:: 66.66666666666...

Eight down, four to go.  And it seems like just yesterday that I started all my treatments.

At this visit we learned that my platelet counts are low due to the oxaliplatin.  That's really a direct, rather than side, effect.  The drugs are supposed to kill rapidly dividing cells, like tumor cells, and blood cell precursors happen to divide rapidly.  Side effects, like the numbness in my hands and the cold intolerance, are hanging around like bad house guests.  So my oncologist dialed back to dose, rather than delay the treatment.  He may be concerned that some of the side effects may become permanent at the regular dose, or that my platelet count will be so low that I'll bleed to death if I cut myself shaving.  I could solve that by waxing my legs instead.

The infusion went according to plan.  I packed my chemo bag with snacks, my laptop, and a DVD of In Plain Sight - Season 1 (who knew there were so many protected witnesses in Albuquerque?)  There were no schedule mishaps or drug formula substitutions.  It all went like clockwork.  Anyway, I have four treatments left and the side effects will only get more intense.  But, what else can I do other than suck it up and push through.  Anyway, I can be persuaded to lay on the couch all day from June 11 - July 11.

No U8 game this weekend, but last Saturday the boys played another hard-fought game, this time with two subs, but we "lost" by one goal.  Nevertheless, we passed the ball well, took a lot of shots, and scored a handful of goals. One of kids even did things that showed he actually listened during practice.

At match time, we did not have a referee, so I reffed the first half.  Thank goodness U8s don't use the offside rule.  I'm a bit vague on the ref's hand signals, other than pointing which way the possession goes.  After all, who looks at the ref during the match?  There must be a sign for "shut up" that I could show to the parents who constantly yell "KICK IT!"  It's freaking soccer, of course they know to kick the ball.  The ref showed up for the second half, claiming that he was stuck in traffic from Baltimore.   Must be a long closing-time rush hour, because our game was at 8 AM.

Everybody talks about the weather...

... but no-one does anything about it. Charles Dudley Warner

Well, I'm going to change all that. This must really be the coldest Spring on record.  Just when I think it's starting to warm up, we get another cold front and I'm back to wearing gloves for soccer practice and games.  I'm tired of it.  So I'm trading in my Honda Accord for a Hummer and I'm going to remove the catalytic converter.  Screw the ozone layer and let the stupid polar bears swim.

Two Saturdays ago, the U8s played another game with only six players, but we won this one.  Well, we don't keep score in this rec league, but the kids do and mention it during the match.  I can't blame them.  There were six of them running all the time in the midday sun without respite.  Who would begrudge them some satisfaction?  Our first two were scored before the sixth player arrived.  We started with five (the quorum) so as not to forfeit.

The opposing coach was yellow carded for mouthing off at the ref.  Obviously he didn't read the e-mail, sent earlier that week, about coach and parent behavior.  He was also way, way, waaaay off base on his protests.  They were all 50-50 balls and the kids bumped into each other - expected for U8 games.  I'll bet this coach, when he plays, is a diver.

I really don't know what makes grown-ups so petulant at U8 games.  If they get that upset about the little calls in a U8 rec game, they shouldn't be coaching.  Maybe some of them are trying to impress the parents with their "knowledge of the game."   Really, what do you say to the ref during the game, other than "Man down."  My role at the game is to make sure the kids get enough playing time (which is really easy when there are no subs) and enjoy the game.  After that, I yell encouragement and minimal instructions like "Stay in your goal!" and "Move up, defense!"  Some of them (the keeper and defender) usually stay in their positions.  Others just roam the field.  Commanding them not to bunch up is futile.  We talk about it in practice and run drills where they're spaced apart and passing, but during the games, all except the keeper and the defender chase the ball.

Soccerheads: Read this article on US defender Clarence Goodson, a protege of Joe Doc (Skill Kills!).

FOLFOX Round 6: At The Half

I'm midway through the FOLFOX treatments.  My oncologist says I'm "doing great."  Funny, I don't feel great at all.  But his perspective includes a whole lot of cancer patients and mine includes me.  The side effects are piling up more, so it's going to be an uphill climb from now through July.

I found a new side effect.  Sometimes, one of my fingers will just stick out and not relax at all.  Another time, I made a fist with my right hand and, when my brain told my fist to relax, it didn't.  Being scientifically minded, I repeated the experiment and used my left hand as a control.  The left hand relaxed, but the right didn't.  Anyway, this has only happened once so far, but I imagine it will again during round 7.  I hope the finger won't get me in trouble.

So, I spent an hour and a half at the Maryland Motor Vehicle Adminstration (the DMV in most other states).  The reason was that someone stole my rear license plate and I had to get a new set.  The thieves also stole my University of Florida license plate frame, so I have to go to webmart and buy a new set.  I wonder if I can get one with Heather Mitts' picture.

I shouldn't complain, but...

When I write "I shouldn't complain," it means that I'm going to complain, but I want you to think I'm a reasonable person who usually knows when to hold his tongue.  Anyway, the topics of my pique are in bold.

The side effects are increasingly annoying.  My sensitivity to cold objects now lasts the entirety of the two-week treatment cycle.  The effects modulate somewhat in the last seven days, but they do not subside completely.  Right now I'm typing this in a room that's probably at 70 degrees, but my fingers are tingling and I'm making more typos than usual.

Fatigue is also an issue.  It used to begin the day after my pump was disconnected., but it now starts earlier and lasts longer.  That's a bit of a problem when trying to run a Cub Scout den meeting, soccer practice, and the game.  Fortunately, those aren't all in one day and I can usually recruit other parents to help out.

My weight is beginning to drop - I lost a pound since my last weigh-in.  Even though I try to "eat as if it's a chore," the insensitive taste buds don't allow me to enjoy much.  I'll probably drop five to ten more pounds.  If you know me, you know that I can't afford to drop weight.

It would be nice if parents brought their kids to the soccer game on time.  I ask that they get there 15 minutes early to warm up and stretch, with the unreasonable hope that all 11 players will be there at game time.  At the last game, only six players were present for kickoff (the U8s play 6v6).  This completely screws up the line-up and substitutions that I plan. 

The referee lined the players up for an equipment check.  She did that last season too and is the only ref to do so.  One of the kids, despite everything I've told them and their parents, wore his shin guards over his socks.  At least I could blame the ref when I told tell dad that his son could not participate until he was properly in uniform.  This dad also yells "KICK IT!"  whenever the ball gets near his son.  I've asked the parents to refrain from coaching, because I don't want the kids to just boot the ball aimlessly, but that is also an unreasonable hope.

We lost the last match horribly. The mercy rule (add another player at -5 goal differential) was implemented in the middle of the first half.  Adding the player didn't help.  Part of the problem is that we took our team picture an hour before the game, and the boys ran around during the waiting time and may have tired themselves out.  So, rev up the "Fire Coach 270" bandwagon again.

I just put golvs on to tyoe.  Cqan you tell?>

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.

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.

Just Throwing This Out (Up?) There

I'll get back to the naming poll in a short while. In the meantime, week 4 is over. It went pretty well except for the radiation burns (dermatitis) that are really starting to chafe. The other side effects are increasing too. A pretty common one is dehydration - I wake up with cotton-mouth and my blood pressure has been low. The nurses asked if i want i.v. fluids to re-hydrate, but I've passed so far, opting to drink more, or "push the fluids." The problem with that is that the fluids push back.

Another side effect is nausea. I've been taking pre-emptive anti-emetics for this and so far, so good. They've prescribed three lines of anti-emetics.

"Take Kytril. If you still have nausea and vomiting, use Prochlorper. And if that doesn't work, use Lorazepam. If that doesn't work, we'll give you a new prescription.

The fourth line anti-emetic, Emend, is the one that actually works, but they don't prescribe that initially because it's too expensive (according to my infectious disease physician friend). Unfortunately, they don't prescribe Marinol. But that would be the best thing for cancer patients who are losing weight because one of the side effects is the munchies.

One of my friends, a mother of three, said about the side effects, "It sounds a lot like pregnancy." So, I have diarrhea, nausea, and exhaustion in common with pregnant women, and the radiation burns maybe feels like having an episiotomy. But the main difference is that I don't get a shower.

"I have a tumor."
"Oh wow. Where are you registered?"
"Tumors R Us, Bye Bye Cancer, and Target."