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Radiation 101

1/31/2015

7 Comments

 
     As I've told you before, every weekday (except federal holidays; tumors observe the federal calendar) I undergo chemoradiation.  For the chemo, I take pills 2x/day called Xeloda.  They are converted in the body to a drug called 5-FU.  You're welcome to make any inappropriate jokes at this point.  Moving on, the enzyme needed to convert Xeloda into 5-FU is more prevalent in tumor cells (and other fast growing cells), so they get a higher dose than run of the mill cells.  How cool is that?  This, combined with the radiation acts as a 1 - 2 knock out punch.  Or at least has The LB reeling.
Picture
Meet the Varian Trilogy 2110 that treats me every week day.
At top is the head, which delivers the radiation.  Within the head are several "leaves" which give shape and direction to the beam of radiation, letting them deliver precise doses to precise locations.
The panel on the right side and the instrument on the left are together an X-ray machine that takes images 1x/week to make sure I've not changed too much (losing weight for example) and that I am indeed in the exact same relative position as the week before.

         The second part is the aforementioned radiation.  This amazingly complex machine looks relatively simple, but looks are deceiving.  Taking one of my famously annoying side tracks, I saw this machine it some artwork before I saw it in person.  Yes, there is cancer artwork.  In this particular artwork series, the patient is portrayed as almost a hapless victim of the big machine, which I found totally foreign.  I mean I guess I can kind of see it.  When you are a cancer patient, there is a lot that just happens to you, independent of any action on your part.  In a weird way, your brain is just a passenger on the journey that is primarily your body's, or more accurately, your tumor's.  As an adult, we're so used to making most of the decisions about ourselves on any given day.  Not now.  Consequently, the focus of any interaction can seem like it's on the cancer; not the entire patient per se, which can make the patient feel like a mere observer.  I said "seem" deliberately because that's not how I see it at all.

     First of all, the people here are very much interested in you as a person.  My conversations with my doctors are just that - conversations.  Same with the other staff.  I'm sure it's very deliberately part of the corporate culture.  As someone else pointed out, that very culture probably attracts that type of person too, so that the two are ideally suited to each other.  And secondly, I see each test, blood draw, biopsy, MRI, radiation treatment, etc. as part of MY attack on TLB.  Not things that are happening to me, rather tools I am employing to actively seek and destroy the tumor.  So, the Varian Trilogy 2110 may look intimidating to some, but I see it as my big, strong friend walking down this dark alley with me.  Yeah, I'm glad for my big, strong friend.

     OK, OK.  Back on track.  So, I report to MD Anderson, check in and head down to my usual Waiting Area F.  They like to put you on the same machine with the same crew every day, so the exact same thing happens each and every time.  I take off everything from the waist down and climb up on to the table.  Remember, I'm short, so my climbing is undoubtedly graceful.  Not.  The table is fitted with different attachments for different patients.  Mine is a belly board with a cutout for my belly.  Remember, having my guts falling down and forward is part of their protection, as is the full bladder.  Then they turn off the lights and 2 or 3 people use green laser guides in conjunction with the artwork they've drawn all over my hips and rump to position me down to the millimeter.  They tell you to "lay heavy."  That means don't try to help them as they're moving you around; they're making really fine adjustments and if you help them, you'll over correct and while you don't end up in a ditch, they have to kind of start over.  Once they have you in position, they turn the lights back on, exit the room and shut this lead door that's at least 8" thick.  Then the treatment begins.

    The entirety of treatment takes about 3 minutes.  One stop overhead, one stop on my right side and one stop on my left and I'm done.  Unless my bladder is overly full.  Then you can guarantee that there will be a student trainee in the control room and they're showing them things on the control panel.  You can tell they're teaching because:
  • It takes longer, and
  • the mouse pointer on any one of the 6 big monitoring screens starts to wander around and hover over different things while I lay there mentally exclaiming, "This is not a good time for teaching!  I have to pee!"
The other possibility when the bladder is overly full is that it's X-ray day.  This more than doubles the time I'm hanging out and just goes to prove that God has a sense of humor.  Not funny God, not funny.

     So, I told you I have a few minutes in time-out while the machine does it's thing.  In studying what I can see while simultaneously not moving at all, I've noticed several things over on my left.  I ALWAYS lay with my head looking left.  On that wall is the bank of various screens showing various things during my treatment.  Below that is a countertop with sundry goods, a wash sink and the like.  One day, I was looking at the counter top and noticed a bright red box (NOTICE: the following may not be suitable for all viewers, although by this time you should know that anything can show up on this blog!).  The counter is a bit far for great detail but I thought I could make out the word "Trojan."  I'm squinting and trying to focus better and sure enough, it's an economy size box of Trojan condoms.    
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I hollered, "Don't look, Ethel!" But it was too late. She'd already been incensed. - Jim Stafford
     Of course, I HAD to ask as soon as the big door swung open and they came in to help me execute my dismount (I try to always stick my landing and then throw my hands straight up in the air, which unfortunately causes my towel to drop right to the floor).  While pretty sure the box was present for legit medical purposes, as I said, I had to ask and they enlightened.  I believe one time I said in this very blog, "Is there any cancer more unglamorous than rectal cancer?"  As it turns out, yes.  Yes there is.  I take it all back and apologize to any and all for that.  I will thank my lucky stars that my treatment does not involve a condom, then show uncharacteristic restraint and not tell you how they're used.
     Showing a more characteristic lack of restraint, I am going to share bit of fun I had with the techs last week while my good friend Debbie was here.  (Aside: Debbie, I'm sorry.  She told me this was NOT for public consumption.  She has good judgement.  I do not.)  Her daughter Meghan had bought some glow in the dark temporary tattoos for me.  I gleefully had Debbie apply one and hopped up on the table expecting much fun.  They unfortunately did not lift my shirt high enough.  I had to say, "Is my shirt in your way?  No?  I think it is.  Lift it."  They did and laughter ensued.  We even shut the lights back off so they could see it glow.  They reported that the teeth especially glow quite nicely.  Again I warn you, may not be suitable for all viewers.  But it's funny.
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My glow-in-the-dark skull. Below you can see two of the many taped-over Sharpie drawings that adorn my backside.
     And now I leave you with THAT in your mind.  See you next time.  And at the risk of sounding repetitive, THANK YOU for your continued thoughts, prayers, well wishes, love and support.  It is an invaluable part of my fight!
7 Comments

A Day in the Life...

1/24/2015

6 Comments

 
    I now have a dozen chemoradiation treatments under my belt.  There will be 28 total before I come home.  I know from a lot of you that you're worried about how I might be holding up.  Well, let me say...

So far, so good!

   I thought a post about what happens in an average day was in order, but there is no average day!  First let me say, I've had very little down time.  It amazes me.  Joe, then Kevin & Mary Ann Kniebel, and now my mother can all attest, you don't sit around much wondering what to do!  Between treatments, appointments, walking to and from, some running thrown in for good measure, trips to the store, running out to the airport, whooping it up in Louisiana and the like, I have yet to sit down and wonder, "Gee, what do I do now?"  Let's go through the past week:
  • Sunday - finished up a fun weekend in Louisiana with Joe, Kevin & Mary Ann Kniebel.  We stayed in an old plantation B&B, cruised the Atchafalaya Swamp/Bayou, ate a lot of good Cajun food, stuffed ourselves on beignets after church and cruised back to BOHICA via the Louisiana coastline where we spent a bit of time at the beach.
Atchafalaya Swamp trip
Joe & Capt. Kim
EVERYTHING in LA wears camo, including the jelly beans. Jeff Foxworthy, where are you?
Mmmm. Cracklins. Don't knock 'em til you try 'em. We first became acquainted with this LA delicacy on a bull delivery trip.
The cathedral. My apologies for not figuring out how to put this upright.
Beignets after church. While technically not a sin, probably good for 20,000 in Purgatory.
My phone said elevation = 0. Everything along the coast is on stilts including schools.
Toes in the water, toes in the sand...
Joe, Kevin & Mary Ann on the shore
  • Monday - Joe headed back to Kansas with the Kniebels after spending 2 weeks with me in transit and settling in to the routine.  You parent/farmer/rancher types know that's a long time to be away from the family and operation.  Fortunately, we have great family, friends, and employees who took up the slack.  The girls are wonderfully responsible, but they had a lot of help anyway from aunts, grandparents, neighbors, etc. They didn't lack for anything but motherly nagging.  Fortunately for them, I am able to nag via cell phone, so we had that covered pretty well.  Right girls?  Monday was a federal holiday (MLK Day) and apparently tumors observe the federal calendar, so no treatment.  I spent the day cleaning, changing sheets, doing laundry and the like.  There is no designated day for this at home, so it was kind of nice in a weird, domestic way.
Picture
Complimentary valet parking for radiation treatment. I prefer to walk in.
  • Tuesday - Back to Work Day!  I reported to the South Campus of MD Anderson for a special MRI.  I am participating in 3 research studies, none of which will benefit me directly, but will hopefully benefit future patients.  This one involved biopsies and MRIs through the course of treatment so that they can get a better handle on some markers that might help indicate which patients will respond well to what treatments.  It has the added benefit that I get some physical evidence of the damage to the LB, which is pretty cool in my book. Since time was tight, I drove up to the main campus and availed myself of the valet parking for radiation patients.  Since you come every day (except holidays, remember?), they have a circle drive where you drop your big mega cab truck at the door and pop in for treatment.  I'm going to outline "treatment" for you in a bit, so don't worry.  A doctor appointment was supposed to happen after that, but I had one Friday, so they cancelled.  This enabled me to pop out to the airport to pick up Mom, who was flying in for a relaxing week at the BOHICA Resort and Golf Club.  We dropped her bags and took the shuttle back up to MDA for a doctor and dietician appointment.  After we were done, I put mom on the shuttle, I walked home and we made dinner.  Cheese stuffed poblano peppers.  Used the extra for omelets the next morning.  Yum.
  • Wednesday - Headed up on the shuttle for a morning treatment and weekly blood draw.  This one involved some research blood and they wanted their money's worth.  We got back at noon, had some lunch and I hopped the shuttle on back up to MDA.  There is a really nice park to the NE of the campus and I went for a nice run.  Worked up a really good sweat.  Apparently, even in January, Houston humidity is atrocious.  Headed up to the Endoscopy floor to get them lined out for tomorrow's test.  They wanted to put me under and I didn't want to be put under.  You can't look the LB in the eye if you're out.  I won that round.  Rolled in at 5:30 (greeted Mom with a "Hi honey.  I'm home!"  She did NOT have a cocktail waiting for me.  Slacker.) and we did the dinner thing again.  Grilled flank steak, in case you were wondering.
  • Thursday - Woke up to rain (glad I got that run in!) Shuttled up to MDA for the daily treatment.  Dashed back home again so I could "study" for an afternoon test.  This time it was a scope and biopsy for the same trial that required the MRI on Tuesday.  Boy, when those guys have a good candidate, they don't let you go.  I had a research person with me all afternoon (turned out to be a long afternoon). They make sure that you're where you're supposed to be at the right time and that the docs get the right things for the study.  I was to report at 12 pm and the procedure was to be at 1pm.  Well, I don't think I got on the table until 3.  I had the coolest Doc, Dr. Raju.  He asked where I was from and responded, "It is really pretty there!"  Turns out, his first faculty appointment was at KU Med.  We had a far ranging discussion covering my former weight, risk factors, running, the Flint Hills, the CEO of KU Med, customer satisfaction, pay scales, K State, etc.  One of his colleagues is a KSU grad who has both a DVM and an MD.  I didn't get the name but I'm going back up to ask.  Anyone know who it might be?  Mom and I had lunch/dinner at MDA since we were both starving (nothing since 7 am) and that was the day.
  • Friday - Still raining so we both shuttled up to MDA for the morning treatment (I would have walked normally).  Afterwards, had a weekly appointment with Dr. Das, who is my radiation oncologist.  He is also head of the Radiation Oncology Fellowship program, so that makes him one of the best.  Excellent.  When someone's toasting your innards, you want them to be really good.  When they drew blood on Wednesday, there were no orders for the weekly routine draw, so back up for more blood.  Now THIS is a cattle call.  Everything else is very nice.  This is take a number and we'll roll you through the chute.  Then we headed for the Houston Museum of Natural History and spent the afternoon looking at Faberge artworks (wow!), T Rexes and mummies.  Nice afternoon.  Then for dinner, I'd been promising Mom Captain Benny's seafood.  The Captain did not disappoint.  Mom had a Corona, which is exactly the 2nd time in my life I've seen my mom drink a beer.  I did not get a picture as I was too shocked.
Picture
Captain Benny's
6 Comments

Dancing in the Rain

1/13/2015

14 Comments

 
Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain.  –Vivian Greene
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Muskrats (I think) enjoying the rain

     The above truism arrived on the cover of a card the other day.  A good friend who lost her mother to cancer sent it.  I guess she knows me better than I thought.  If nothing else, I’m generally a dance in the rain type.  Of course you say, this is a pretty good rain.  In fact, I walked right into a hurricane on Dec. 5.  However, I’m still rolling along nicely.
    Much is made of the placebo effect whenever there’s something new in medicine.  I would postulate that a lot of the placebo effect is the patient’s attitude.  When you feel like you have hope (maybe you think whatever you’re taking is working), stress is reduced.  I know from my schooling that once stress hormones are ramped up, they take time to come down.  An animal study that stuck with me said there were measurable stress hormones 21 days after the stressor.  And those hormones have powerful effects.  In the short term, they’re good.  They help a body deal with a fight of some sort.  Long term stress (like, oh say, a cancer diagnosis) is really bad for a body in all sorts of ways.  So whether a person gets stress reduction from a placebo effect, or learns to dance in the rain, there are real and positive effects on overall health.

So this is how I’m dancing these days:

  • Getting outside – We’re walking up to the campus and around it as weather permits. Outdoors is good for the soul.
  • Smelling the roses, literally – There are rose gardens all over the campus.  I smell them every time.  Two Middle-Eastern looking men saw that and picked one for me one day, insisting I take it.  No one arrested us.  Phew!
  • Blonde hair – It was probably my new blonde hair that caused them to do this for me.  Deciding that if my hair was going to fall out or thin, it would be a great time to try being a blonde.  That way, if I didn’t like the color or the upkeep, I at least wouldn’t have to put up with it for long.  My friend Whitney made me a coppery blonde and I love it!
  • Trying out the Debbie smile – I’ve said this before, but my friend Debbie has the most beautiful smile.  She smiles a lot and brightens days.  On a particularly heinous trip to WalMart before Christmas, she decided to turn up the normal megawatt smile to vaporize.  A young man stopped in his tracks and told her she just made his day.  I know I’ve also said this before, but my other best friend Mary Ann and I have the same normal resting scary face.  Thus, I am a bit worried that as I try to brighten days with a smile, I may be flashing some sort of maniacal looking grimace at people and scaring them.  Maybe with practice, I’ll get better.
  • Exploring the neighborhood – Houston has a lot of shopping.  All the way from The Galleria (where they won’t even let you in some of the stores unless they like your look) to the Fiesta Mart where apparently most of Houston’s widely varied ethnic groups shop.  British, African, Indian, Mexican, South American, German, Indonesian, Chinese, Japanese (I’m tempted to follow that with “Dirty knees…” Just ignore that if it makes no sense and consider yourself blessedly sophisticated), etc.  I could kill hours.
  • Considering all life’s random events to be blessings – Because they are.  Things like the Starbucks right around the corner on our first walk up to MD Anderson at 6am.  God knows I need lattes and God provides.  Can’t hurt, right?
  • Making the trip down and vacation – We stopped at Turner Falls in OK because I’ve always wanted to.  It was GORGEOUS.  Conversely, I could imagine it being hell on earth during warm summer weekends when there are thousands of people there.  For our overnight, we stayed at Huntsville State Park in TX.  It was gorgeous and smelled of pine trees.  Ahhhh….

  • Put on your dancin' shoes, my friends. The band is warming up!
Picture
Turner Falls in Oklahoma
14 Comments

Finally, I'm back online!

1/9/2015

6 Comments

 
                Joe & I arrived here to start treatment on Jan. 5.  Since then, all the treatment stuff has gone fine, but the internet access has taken 20 years off my life, thus, no blog posts.  Those that know me know I can ramble on, so in order to cut myself off at the pass, I’m just going to make a list:

  • Wireless stick problems – I should have listened to that little voice that said, “It doesn’t say anything about Windows 8 compatible,” instead of listening to the tech guy telling me it’ll be fine.  It wasn’t and caused me many days and lots of swearing.
  • Windows 8 wireless stick problems – Apparently uninstalling the previous drivers wasn’t sufficient and something had been written to my system that wasn’t undone.  KLA CEO Matt Teagarden suggested a system restore point.  He is brilliant.
  • System restore problems – Needed to go back further than the bad stick install either that or Windows decided some of that code should remain anyways.  Didn’t figure out that gem until tonight, 2 days after the first restore.
  • Internet hogs at BOHICA – Apparently, folks set HUGE files to download so they can watch them later at their leisure.  These folks are the same ones who go through a potluck line, come to a plate with 2 dozen deviled eggs and seeing 50 people in attendance proceed to grab 6 because they know there won’t be any seconds.  Mostly because they already took them all.  Well, they take all the bandwidth.  Tried to download a scanned bill tonight and it took 5 full minutes.
  • US Cellular doesn’t really mean free roaming – When using data outside the home area, they limit you to 200MB, which is nothing if you navigate, look at FB or check you appointments at MDAnderson.org.  I found out that when I determined trying to do anything on the BOHICA wifi was futile and I wanted to use my phone for a hotspot.  In addition, their system automatically throttles you down (their term) and can cut me completely off with no notice.  There is no option to flag your account and beg for mercy because you’re getting cancer treatments outside of their network.  Again, Grrrr.
  • Wifi hotspot debacles – These suckers are just like phone plans; the devil (and lots of hidden charges) are in the details.  My friend Debbie did some quick research online while I was at the store and helped me figure out which to get.  But then, because I still hadn’t figured out that a second system restore was needed, I went round and round with the new hotspot and ended up with tech support (somewhere in India) 2x.  I did stuff on my end, hung out with tech support and he finally told me there were hardware issues and take it back for an exchange.  Fortunately, I did something he told me not to do (in fact he got very short with me) after I hung up and my hotspot is working!  Victory is mine, 5 days later!
  • Chase, in an effort to protect me from fraudulent charges, shut down my CC accounts.  Never mind that I’d been proactive and entered my travel dates and locations before I left home.  I found this out after waiting in a huge line at Target to purchase the 2nd wireless stick.  Denied.  Whipped out the ranch card.  Denied.  Was escorted to the side to see if I wanted to take it up with my CC company.  Heck yes I did!  They apologized and told me it was cleared and I was good to go.  Waited in line a 2nd time.  Denied.  Called again and while I was working my way through the Chase system, the store manager was called over.  Great.  This time they really truly promised it would clear and I made the manager run it while I held Chase hostage.  Too many tries – denied.  AAARRGGGGHHHHH!  She ended up selling me a gift card which was approved thank goodness and my head was saved from exploding.
  • Chase, in further efforts to protect me did the SAME THING to me at WalMart 2 nights later when we were trying to purchase the wifi hotspot.  No way!  This time, I called, explained the situation to the rep in my best hyper calm you are about to die voice (it’s pretty good) and told her I would now be immediately connected to a manager.  She begged to let me get the transaction finished, so Joe got back into another long line so they could run it again.  It ran.  We got out of there but I still had Chase on the phone.  The CS manager got an earful.  I would be done with them but am not in a position to be at this time.  Grrrrrr.
  • It should be noted that Chase approved a whole lot of other transactions, including Starbucks, gas, propane, office copays and my chemo prescription which was $3800.  Let me let that sink in - $3800.  That’s just my share.  I had an alternative.  I could wear a pump about 12x6x6 in a pack for the next 6 weeks that would feed the chemo in 24 hours/day.  This BC/BS would consider part of my treatment, but not if I swallow it 2x/day.  This they only pay at 50%.  Joe and I decided the $3800 was worth it.  That charge went through just fine.  I guess I shouldn’t complain – they’ll be paying a lot over the next year or two.  Can’t wait to see what it’ll do to my rates next year.

Well, I still rambled, but that’s why you’ve not heard from me in several days.  I will catch you up over the next few days on the trip down, the treatments and other assorted things that wander into my mind.  Thanks to all the support while we’ve tried to figure this all out.  As always, your thoughts, prayers, comments keep my spirits up!

Picture
The bunk bedroom has been converted to my stand up office, Houston division.
6 Comments

On the Way!

1/2/2015

6 Comments

 
We're officially rolling down the road now. Listening to K-State playing in the Alamo Bowl. Left tonight instead of tomorrow morning because ice and snow are supposed to start sometime overnight.

More to follow when we're in Houston. Thanks for all your support. Together, we're going to take TLB down!
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    Barb Downey

    On Dec. 5, 2014, I was diagnosed with rectal cancer. And that's where we start. If you're here for the first time, you'll have to read from the bottom (no pun intended!) up. Go to Dec 2014 and scroll to the bottom of the page...

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Downey Ranch, Inc.
Joe Carpenter & Barb Downey
37929 Wabaunsee Rd.
Wamego, KS  66547

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