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The Plan of Attack

12/21/2014

14 Comments

 
    Yesterday was a travel day.  We left the security of MD Anderson and headed for home.  There was something about being at MDA that was comforting.  THEY weren't out of their comfort zone.  THEY knew the terrain like the back of their hand.  With them to follow, it was easy to navigate this new world of cancer patient.  Then all of a sudden, the map was gone, the terrain looked unfamiliar and foreign and the way was just not quite clear.  But it will get clearer, and because I'm female, I'll pull over at the gas station and ask directions if I have to.  Had enough of the metaphors yet?
    Joe and I have weighed and discussed, laid out options, discerned what we believe to be all the pros and cons of different courses and have made some decisions.  I'm going to lay it all out for you in the next few paragraphs, so if you're uncomfortable with some of the earthier facts and terms of the matter, heed the warning and instead of continuing on, click on the video below.  Then be distracted by the suggestions that You Tube will make for similar videos (try the one about the new dog coming to the house first; it's cute), kill way more time than you intended and then go on to whatever you were supposed to be doing in the first place.
    Well, if you're still here, you're ready for the details, so I'll only keep you waiting one brief moment while I tell you that after a particularly stressful day recently, Joe asked to watch cat videos, so I queued up a 20 or 30 minute one on the Chromecast and made it all better.  Can't have a bad day after watching cat videos apparently.

Concurrent Chemo & Radiation
Jan 5 - approximately Feb. 20

    This is conveniently know as chemoradiation.  Clever. I start on Jan. 6 with a simulation where they do some Xray mapping of everything, meet and plan and get it all lined out.  Then a couple of days later, they tattoo my hind end for permanent guide posts and begin the treatment.  This of course brings up very interesting scenarios where I ask folks if they'd like to see my tattoos.  Ah, the possibilities are endless!
  • Chemoradiation will occur 5 days/week with weekends off.  I consider the weekends "time off for good behavior."
  • I will be backside up in the air with my guts kind of vacuumed into a kind of beanbag chair (actual terminology used to describe it to me) with the intent that this and gravity hold most of my guts out of the way of the radiation.  Go ahead; try to picture this because I can't.  If you think you've figured it out, make a stick figure drawing and send it to me.
  • I am also instructed to have my bladder as full as I think I can tolerate and manage when I arrive for my appointment each day.  This also helps push my guts away from the target site and protect them from injury.  However, the possibilities of miscalculation on my part as to what exactly I can tolerate and manage brings up additional possibilities of embarrassment, as if having your backside up in the air and all your tattoos showing isn't enough.
  • The treatment itself lasts only a couple of minutes.  The undressing and positioning take longer.
  • The treatments go on for about 6 weeks, putting me somewhere around Feb. 20 for my last treatment.
  • Once/week, I will have appointments with my docs to monitor my progress and assess any complications that need to be addressed.  In addition, CT scans will be performed at intervals to monitor the injury to The Little Bastard.  I can't wait to see those!

Rest & Recovery - March & part of April
Surgery - Mid April

6-8 weeks of getting strength back puts surgery sometime around April 15.  Man, this is almost too easy.  I may have some sort of contest as to who can make the best joke that ties together the IRS and what's going to happen to me.  Stay tuned for details, need not be present to win, one entry per household please.
  • They will remove my entire rectum and possibly some of the colon.
  • There is a possibility for the surgery to be done robotically, which makes recovery easier.  Also, it's just plain cool.
  • With luck and really skillful and closely watched radiation, there will be healthy tissue between my anus and the resection site.  Enough healthy tissue that it can be reconnected in the future. (Hey, I warned you this was going to be earthy.  Feel free to go back to cat videos.) In the interim (about 6 months or so), I will have an ileostomy.  There is the possibility that when they do the surgery, they won't be able to save the anus.  In that event, I'll have a permanent ostomy.  There are worse things.  My sister made me an Inigo Montoya t-shirt.  $20 to the first person who makes and wears a "Save the Anus" t-shirt.  It can even be hand lettered with a Sharpie.  Note: you must provide photographic proof and there must be at least one witness who knows neither you nor the context of the slogan.
  • I will be in the hospital for 1 week and will need to hang around Houston for another week after that.

Rest & recovery - Mid April - May
Chemotherapy - June - Nov/Dec

  • 4-6 months of chemotherapy.
  • Infusions are done periodically, I THINK every 2 weeks
  • The length of the course and the actual drugs used depend on the final pathology of the diseased rectum and the lymph nodes removed.


    So there you have it.  The battle plans are drawn.  We've decided I'll have the course of chemoradiation at MDA in Houston.  The tumor is so very close to my anus for one thing.  There are a couple of other complications too and my surgeon feels strongly about MDA doing the radiation.  Heeding the wisdom of "you only get one chance to do it right the first time," we feel most confident in MDA.  6 weeks away from family, friends, the ranch and cattle, the winter weather in KS (wait - that last one is a GOOD thing) is tough to think about.  But 6 weeks in exchange at my absolute best shot of coming out of this with the best possible outcome made the decision easy in the end.
    What has become affectionately known as "Camp Bucky" aka our camper, will be making the drive down to Houston to spend the next 6 weeks at a campground conveniently located just 3.1 miles from MD Anderson.  That way, I'll have my stuff, my place, a workable office set up, WiFi and all the other things I think I'll need to make the time bearable and productive.  The route up there is on a main thoroughfare through a nice neighborhood, so while you people are slogging through ice and snow, I'll be strolling up to the campus for my daily treatments.  Should I not feel like walking, they'll valet park the Mega Cab (THAT ought to be interesting!) for me everyday for free.  Should I not feel like driving myself, the campground has a free shuttle service.
Picture
    When last we met I talked about Inigo Montoya and I said that like his journey, this one requires focus, determination, planning and preparation, then execution.  I'd say we've got through the planning stage.  A little more preparation, then we start on the heart of the matter; the execution.  Prepare to die, you Little Bastard.  Prepare to die.

14 Comments
Vickie Kern
12/22/2014 12:47:39 am

Barb, You are one amazing lady. Our prayers and thoughts will continue to be with you through your ups and the downs. I don't know you well but I know well who you are as it is evidenced in your drive, in your generosity, in your successes, your unselfishness and so very well in those two wonderful progeny of yours. Cancer is just plan hard and it sucks but there are many who beat it and I can't imagine anything but that being the case for you.

Reply
Heather Welch
12/22/2014 01:49:14 am

A solid plan such as this needs devoted support attached. This prayer warrior is signing my name in blood. Love you, Barb.

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Kris Hanson
12/22/2014 07:34:02 am

Me too Heather Welch. Very solid plan Downey. Should you need help in any phase of execution I am available and game for anything.

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John Downey
12/22/2014 07:54:43 am

I wish you could have your cake and eat it too in terms of not having to be away from home and getting Best in Class treatment, but if you had to choose one or the other, I'm glad you went for Best in Class treatment. Hopefully, you and Joe can make it a tolerable home away from home. If I understand, you'll have the chemoradiation starter course at MDA, as well as the surgery? Then final chemo course back in KS?

Shannan and I will be hoping you and Joe can identify any ways that we can make your stay in Houston as best as it can be. Shall I get to work on Youtube clips and figuring out what color ribbons we should use for rectal cancer awareness? ;O)

Love you and wishing you the best with each day!

Reply
Jane Drees Casburn
12/22/2014 10:42:25 am

My thoughts and prayers are with you sista! Stay strong! Thanks for sharing your journey!

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Ralph Reynolds
12/22/2014 11:26:39 am

Hey Barb just heard about your illness and I'm so very sorry. That being said your are with out a doubt the toughest lady I've ever met from hearding cattle to running the dirt roads of Kansas. So I'm totally confident you'll beat this thing. I'll being praying for you and your family I'll have my mom pray for you guys also(she prob is higher on gods list then I am haha)...So good luck I'll see you soon. I was thinking about a slogan to put on some hoodies for my hunters you think they'd understand SAVE THE ANUS Keep the faith and your sence of humor. Good Luck !!!

Reply
Darryl Thornton
12/23/2014 03:33:48 am

Barb I only met you one time when we came to your ranch but you treated us just like family imsorry to hear about your trouble and we will be praying for you here in Mississippi hope everthing turns out good

Reply
Nancy
12/23/2014 03:37:04 am

OK, if I were getting my buns tatooed I would DEMAND artistic input as part of my patient rights. Some helpful sugestions:
Bulls eyes - hey, accuracy matters
Flaming eyeballs - makes you look tough
Kitties - for Joe
DR logos - every situation presents a marketing opportunity
Any street sign - one way, construction zone, no U turn, you get it.
I like flowers
what's up Doc
Wildcat Willy

Ah, the possibilities are endless. You're paying good money for this, don't settle.

Reply
Rachelle Routh
12/24/2014 07:54:43 am

Barb, my thoughts and prayers are with you as well. You are one courageous lady. I have admired your hard work through years. Your hours of running have been so inspiring. With your determination you will conquer this. May God be your strength and peace through this journey. Please let us help out wherever needed. Much love to you. Rachelle Routh and family ( your llama neighbors)

Reply
Sharon Lindell link
12/24/2014 02:57:08 pm

My cousin had a stoma bag for a while, and asked for ideas on decorating it. Someone suggested a Jayhawk, since he's a KU fan. I said I thought that was quite fitting! He failed to see my humor! Anyway, he also wrote what has become my favorite "go to" quote when I'm feeling low --- "So be of good cheer, and know that no matter how bad it gets, it can get worse, but also, also remember that Our Lord Jesus Christ has said to each of us in person and in complete eye to eye contact!!! 'Do not let your heart be troubled!' I can live on that. Even today...." We'll be praying for you, Barb. I know you will continue to be an inspiration to everyone you meet, even through this chapter of life.

Reply
Rochelle Heimerman Miller
12/25/2014 03:04:29 am

Barb, Jon told me of your diagnosis. I'm so sorry you have to go through this; we will be praying for you. Sounds like you are in good hands; that is so important. Hang in there . . .

Reply
Tim Coppinger
12/25/2014 11:47:27 pm

just a few points for what there worth

If you'll send your mailing address, I'll buy you a Sonic card. I see daily Route 44 cherry limeades in your future.

When did Monty Hall drop in and give you the choice of the IRS and what's behind Door #2? I feel cheated.

I'll show you mine if you show me yours (tattoos, that is).

Does it have to be Save the Anus? I feel a literary challenge coming on like Some quote by Shakespeare or Mark Twain or Baxter Black.

You are in my prayers and the prayers of my parishioners (all four congregations) so mark out SW Missouri on your prayer coverage map.


Reply
Barb
12/31/2014 03:10:17 am

Tim:

Check
Door #2 - I like it!
You have tattoos?!?
Consider all restrictions on verbiage removed. Have at it!
THANK YOU!

Reply
British Columbia Cam Girls link
4/19/2021 10:25:02 pm

Thhis is a great post thanks

Reply



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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

(785) 456-8160 - Ranch
(785) 556-8160 - Barb mobile
(785) 556-8161 - Joe mobile


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