Wednesday, January 30, 2013

Waiting, waiting

One of the joys of anything to do with medical treatment in general,  and cancer treatment in particular, is WAITING.  Waiting for an appointment,  waiting for tests,  waiting for results.   For cancer it's always waiting to see what happens next.  With no "cure" for any cancer,  every one's experience is "Treat & Wait".  You treat,  you wait to see the results,  and for the real cancers (not like mine...) you wait to see if it spreads or comes back,  waiting for your 5 year "remission" time to come up.

Right now for me,  I am just waiting to see if I am going to crash after my chemo treatment.  It's now been 9 days since I finished up my Cladribine infusion.  Last time I did this,  about 1 to 2 weeks after infusion,  I went from feeling "pretty good" to feeling like absolute crap for 10 plus days.  Here I am at 9 days,  and for the most part,  I still feel really good.  No Crash.  Good,  right?

Well,  of course I can't shake the feeling that the truck I am expecting to get hit by is lurking around one corner or the other.  When it will appear and run me down is the question.  Then you start thinking "maybe I won't get the 'smack-down' this time".  That is a dangerous thought process,  as usually it's right about then the crash hits.  We shall see.

I did have an outbreak of one of those neat little things that chemo & a trashed immune system gets you.  Got a neat little outbreak of Shingles again.  One of those things you think of as an "Old People" disease,  one you will never have.  Turns out that after & during Chemo people are very susceptible to that little joy.  Since I had had a lovely bout with that 2 years after my last chemo,  I was able to identify  the outbreak,  get to the Doc,  and get a bunch of drugs going quickly.  A big dose of Steroids and Anti-Virals nipped this outbreak before things went real bad.  Neat thing about THESE drugs is it leaves me so hoarse I can barely talk.

A quick 'Crossin-Colorado "Public Service" announcement here....
If you ever had Chicken Pox,  and are over 50 years old or immune system compromised at all,  go get a Shingles Vaccination.  You do NOT want to have this shit.    Months of pain,  tingling,  itching, rashes and pain meds are not fun.  While learning that you can eat enough Vicodin week after week that you can adapt enough to do mountain bike races on the stuff (Performance enhancing?  not really....),  might be a neat little tidbit to learn about yourself,  I really advise against it.

So,  I wait.  At least I don't feel like crap.  Yet.

Am getting psyched for CX worlds this weekend.  Neat to cyber-stalk all the people you see every weekend in the masters races,  and then plan on having some folks over to watch the Elite Live streaming on Sunday.   Been fun reading about the Belgians and them having to travel more than 50 miles for a race for a change.  Poor Klaas Vantornout only has 3 bikes & 7 sets of wheels with him for worlds,  not his usual 7 bikes.   Big weekend.  Might even have a beer if I keep feeling like this.  (I hear there is even some "big game" later that day.....)

OK,  I realize that MAYBE everyone is done with the whole "Lance thing",  and MAYBE baseball can take some of the doping load with A-Rod,  but this little gem was too good not to share.  STELLAR  creativity.  Shot my drink out of my nose when I first watched this.  Can't help but make fun of the guy.

Wednesday, January 23, 2013

The descent

And NOT the fun,  rip a long mountain bike downhill kind of descent.

After a pretty much side effect free and feeling good Chemo infusion period,  the chickens are starting to come home to roost.   Ran with the Chemo Pump for the full 7 days,  with that timing out Monday AM.  Damn good to be rid of that thing attached to my arm.  Was starting to forget about it,  jumping up off the couch and the like,  then like a rowdy dog,  quickly coming to the end of my leash.  Getting that thing off is the first good milestone of the treatment process.

With no more need for the pump or any long-term infusions,  I also got to get rid of the PICC line.  Just as creepy as threading that thing INTO your chest,  removing it is pretty weird,  too.  As you can see below,  it is just a "Grab & Tug Firmly" kind of thing,  with a nice one hand coiling action on display as well.

PICC Line Removal from Dale Riley on Vimeo.

And yes,  you can feel it sliding out,  from about the shoulder down.  Nice.

Once I get rid of that,  and have a full load of Cyto-Toxins on board,  the waiting game begins.  Imagine KNOWING you will be hit by a truck any time,  but just not knowing EXACTLY when it will happen.  That is what happens with the Cladribine,  it takes a while for it to make you start feeling poorly.  PICC line & pump out on Monday,  still feeling good.  Blood work & a Doc visit on Tuesday.  Tuesday there was that "hmmmm.  do I feel the achy bones coming on?" thought in the morning.  At the Doc,  blood counts have plummeted,  as expected.  My White Blood Cell count went from ~5.4 to about ~1.7 over the week of treatment.  That drop is in reaction to killing ALL the Lymphocytes and Neutrophils in my blood,  both good & bad.  (The good ones grow back more & faster than the Mutant Cancer cells....)   My Neutrophils were down to 1.2K/uL,  just above the 1K "limit" where they start pumping you full of antibiotics to insure you do not get infected.

Thus,  they gave me what is basically EPO for the white blood cells (I know,  I know,  wrong kind...),  a drug called Neulasta.  Yet another Amgen drug,  described by the Chemo nurses as one of the "New Wonder Drugs" in the Leukemia pharmacology arsenal.   The intent is to boost production of the good lymphocytes and neutrophils,  keeping your immune system supplemented enough to not need to start the antibiotics,  or in most chemos,  stopping or delaying additional Chemo rounds.   For me,  it's more preventative.  This stuff has the side affect of generating "bone aches & pain",  same as the Cladribine.  OH,  and it happens to cost $10,000 dollars a dose.  (Guess it's still under patent...)  I am going thru the insurance dollars in a hot & heavy fury this time.  Thank god I HAVE insurance,  and good insurance at that.

Anyway,  it seems as if the Neulasta was the last drug I could tolerate,  as by the end of Tuesday,  I was on the Tylenol,  bones & Joints aching away,  and the nausea was peeking back in.  It all just got worse today.  Not sure if it is the real onset of what should be a solid week of ZERO fun,  or just the Neulasta.  We'll see soon enough.  Getting thru that will be the next milestone.  Had been able to even go ride easy for the last week at times.  That may well be over for now.  Oh well.

On a brighter note,  the media is no longer feeding like shark on the "Lance" debacle,  and coming up February 2,3 is the World Cyclocross Championships in Louisville  (no,  not the bowl of death but somewhere in Kentucky.   I am sure the Belgian contingent is excited to come visit us,  what with the "Lax gun laws & Methamphetamines".   Classic.

It will be streaming live for those who did not fly out to Loo-ie-ville and buy the $40 Tickets for the weekend.    I hope to have enough of a immune system to have some folks over to watch (Or even just to NOT be huddled in a ball whining like a little girl.  Yee ha,  here comes the fun stuff.

Wednesday, January 16, 2013

Off to the (other) races

My VERY non-Lance comeback to competitive cycling has begun (again...).

Started my treatment for the Hairy Cell Leukemia that had been slowly slowing me down till I was riding like a 2 year old on a strider.  Hairy Cell is a chronic cancer,  meaning that the treatment does not cure or kill it,  but only puts it in remission,  bringing the number of diseased cells down to a low enough level to prevent any symptoms.  Sad part is,  they then build up again,  quite slowly in the case of HCL,  but eventually you come out of remission and need treatment again.  In my case,  it looks to be 4-5 years of remission.  This is not NEARLY as long of a remission as I would care for.  A bit on the short side of median overall HCL remission times.  With only about 500 cases of HCL diagnosed a year in the US,  statistics are not good for my disease,   either treatment or duration wise.  This can make dealing with this "interesting" compared to the more common cancers at times.

So,  how does one put the fuzzy little bastards away for whatever time you can?   Treatment is VERY mild and tolerable by any normal cancer treatment standard.  The normal treatment is a single round,  5-7 days of a single Chemotherapy drug.  (Many chemo regimens now days use "cocktails" of multiple chemo drugs...).  Couple of weeks of feeling poorly,  reduced blood counts and you pretty quickly recover back to normal.  There is a newer treatment available now,  adding a "Monoclonal Antibody" 4 weeks after the Chemotherapy drug.  The intent is to eliminate MORE of the "residual disease",  killing more of the cancerous blood cells,  with the thought that this can lead to longer remissions by taking longer to "grow back".  Again,  the rarity of my disease rears it's ugly head in that there is only one small clinical trial of this drug combination with results so far.  At least that one small study seemed to show longer remissions.  With minimal side effects of the antibody drugs,  I opted to give it a shot,  again in the hope of getting more than the 4 years of remission before getting "slowed down" again.  Let's do this while I am "young" was my line.  Funny,  huh?

On Monday,  January 14,  I started my treatment.  A quick visit to the "Vascular Access Team" at Longmont United Hospital was first.  This was for the "PICC Line".  A "Peripherally Inserted Central Catheter" is a fancy IV,  one that you can go home with,  and allows multiple weeks of IV access.  This is a LOT less invasive that a "Port",  the other type of long-term IV access many chemo patients "get" to have.

Now,  mind you,  having someone snake a 45cm long tube into your "Superior Vena Cava" by way of your bicep is a pretty creepy "procedure".   Putting a "catheter" in your "Superior Vena Cava" via a "peripheral" is really just medical talk for cramming a tube in your arm and snaking it into your HEART.  What is weird about THAT?

Here is the nice nurse lady holding up a demo PICC line.  Yep.  in the arm,  over to the heart.  Sure.

This is my second PICC line now,  and in spite of the creepy-ness,  they are no more uncomfortable than getting a normal IV.  So in less than an hour,  you get a cool set of tubes hanging out of your arm.  And  you quickly forget that little purple tube goes into your chest. (sort of...)

Proper Access established,  run over to the GREAT folks at Rocky Mountain Cancer Center to get my dose of Cyto-Toxins going.  The standard HCL Chemo drug is "Cladribine"  .    I get about 50 mL or so (Not very much..) over a 7 day infusion.  Rather than the typical chemo experience of getting to go in to the "Treatment Room",  and getting endless IVs on some repeating schedule,  I can get my dose from an Ambulatory Infusion Pump,  a small pump I can carry around for that week.   This stuff is the other reason I can't get a regular IV.  It is SO nasty,  it can ONLY go in the high-volume veins near the heart,  a regular vein in the arm would get "cooked" from this stuff.  Neat,  huh?

All said & done,  I then get to tote this cute little setup around for the week.  I throw it in a fanny pack,  just for that '70s kinda fun vibe.

The pump pushes out 0.1mL of goop every three minutes,  with a nice little "Click-Whirr-Click" noise. Always reminding you it's going in.  Gives you the chance to remember what is going on and say things like "Die,  you fuzzy little bastards,  DIE!" to your own blood marrow.  Well,  at least **I** do things like that.  Maybe not all cancer patinets do.

Three days in as I write this,  and as in my last treatment,  I feel nothing yet.  Takes two or so weeks for THAT truck to run me over.   Always nice to know you are going to get hit.  Still feel good enough to go for a ride today,  even.  Just tuck your little friend in the jersey pocket,  let the IV tube dangle like a IPOD cord and go do it.  (Yes,  my chemo nurses did not think that was a good idea....  but then again they had no REAL reason NOT to.....)

Will finish up the week of hot pump action,  blood draws every 3 days, etc.  Then I will get ready for the crash.  Can't wait for that.  I'll keep the full blow-by blow updates coming as the fun unfolds.

Just as a side note,  I would like to personally thank Lance Armstrong for making the entire sport of competitive cycling look like a soap opera/freak show/TMZ episode.  ( I am SURE he reads my blog regularly...)
Oprah?  Really?  OPRAH is where you choose to come "clean"?

Good God.  Stinks like a herd of "crisis managers" and spin doctors to me.  Hmmm.  MAYBE Lance hired a herd of those kind of folks to polish the turd his "image" has become?  Nah.    At least it provides endless internet fodder and drinking games.  We'll be playing BingoSTRONG while watching that nonsense tomorrow night.  Should look just like this....

No matter what,  Thanks,  Lance.  You've done a GREAT job helping the sport you say you "love".  I really appreciate it.   Dick.

Thursday, January 3, 2013

NO fun allowed.

As I ranted on and on about a few weeks back,  I see that we WILL be abiding by the new "rules de upgrade",  starting right..... about........... NOW.

If you watched the BRAC upgrade points (or were one of the lucky ones to get caught up...) you saw that anyone with enough upgrade points for the "new and Improved" 2013 upgrade criteria were bumped up a category in the last weeks.  Cat 4,  Cat3,  no one escaped "The Purge".

Some sniffing about revealed that outside of the points-driven purge,  the Cat 4 purge of the sandbaggers with (gasp) more than 10 whole races in the 4's are quite likely to see that same "congratulations!" E-Mail soon.  This would of course include those slackers who never came close to seeing the front 1/2 of a cat 4 field in that long,  sandbagging,  10 race cat 4 career.

Is upgrading on points good?  Yes.  Is preventing sandbagging good?  Yes.  Is it noble to want to challenge yourself against the best available competition?  Yes.  Is it a BAD thing to make Cyclocross Cat 4 a "true" beginner group?  No.  Is it right to force a back of the pack 4 into the 3s?  Hmmm..

Is it going to motivate those new riders,  JUST starting to REALLY get "into" racing,  where they might start to see the potential to see that front half of a race,  to taste even the potential of some small racing success,  get them REALLY hooked on this thing,  and then toss them into a big field of Cat 3s?  Probably not.

You may not agree with my ranting about what the "powers that be" that rule competitive cycling like Assad rules Syria,  decide for this sport.  You may not agree with my endless whining about the back of the pack viewpoint,  but I am not alone.  The slightly off base dudes at DrunkCyclist seem to share some of my love of the Colorado Springs Mafia. (See #3 in that link)

(graphic stolen directly from said Blog....)

Sometimes I just do not GET what the hell some of these things are supposed to be "fixing".  I just get frustrated by the complete lack of understanding for "Recreational Racing",  just racing for fun at a accessible level.  A level that takes maybe less commitment to training,  to a "bike racer" lifestyle,  yes,  maybe an "easier" level.  Can (and will??) many people get that satisfaction out of always racing to avoid DFL?  Sure,  but seems like a LOT more people might enjoy being even remotely "competitive" in results.  
Kona Loves Cyclocross from Kona Bikes on Vimeo.

I just do not see why catering a bit to that kind of rider would do anything but bring many more into the sport.  Not everyone likes to get their hind end handed to them week after week,  then get the "well just train more/get faster,  and you can play" treatment.  The more people you get,  and keep in the bottom of the system,  the better chance to get more of those elite riders the USAC caters so exclusively to.

Am I maybe over blowing this stuff (Again..)?  Maybe. (Probably..)
Will the Sport Survive (if not thrive..)?  Most Likely.
Might I be out of touch?  Likely.
Might I be completely wrong?  Also Likely.

Rant off.  Enjoy your New Year.  Watch/Go to Louisville for worlds.  Celebrate that "little accomplishment" for US Cyclocross.  THAT is a pretty cool thing.