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A Day in the Life...

1/24/2015

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.

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.

Captain Benny's

Dancing in the Rain

1/13/2015

Life isn’t about waiting for the storm to pass. It’s about learning how to dance in the rain. –Vivian Greene

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!

Turner Falls in Oklahoma

Finally, I'm back online!

1/9/2015

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!

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

On the Way!

1/2/2015

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!

Now we wait (and enjoy a few random observations)

12/30/2014

As you know, I report for duty on Jan. 5 at MD Anderson. I have labs and doctor appointments that day, then on Jan. 6, I go through my simulation. This is where we draw a bead on The Little Bastard (see the previous post for the complete schedule). Then it's a day or two before all is ready and we get to start blasting away with massive doses of radiation that combined with the chemo should literally fry the sucker. Which made me think of my favorite comic strip, Calvin and Hobbes. I've posted the appropriate frame to the right for your enjoyment.
So if I've got a moniker for The Little Bastard, I guess we've just christened the radiation equipment "The Mertilizer." I may have to print this cartoon up and see if they'll hang it on the wall.

My radiologist with an undoubtedly very expensive piece of equipment, getting ready to irradiate my backside.

Back on to the subject though, which is waiting. I do not like waiting. Jan. 5 seems like FOREVER away. Patience is not my strong suit. Once I've decided something, I want it done NOW. It must be a family trait that I inherited from my father. He was notorious for going to a car dealer and coming home with a vehicle a very short time later with no discussion, or Sunday trips to a car lot, or brochures laying around or any of that. And the suits - he wore a suit and tie to work every single day. The man had a lot of suits (and still does). We kids were pretty sure he walked into wherever it was that made his suits and said, "Got a suit? I'll take it," And it was done. So I want to be started with this yesterday, or earlier. Not next Monday. Now, dang it!
Speaking of next Monday, I'll take a load off all of your minds and let you know that Joe is going with me. You all win. I was determined to drive down there by myself and "save" Joe for when I really needed him. However, I was subjected to what amounted to an intervention the other night and suffice it to say, I won't be going alone. It's probably a good idea. Just don't tell Mary Ann & Debbie I admitted that.

Random observations

The official ribbon for colorectal cancer is blue. It should be brown.
If I pin a blue ribbon to my back pocket, would it be a blue moon?
Testicular cancer should get the blue ribbon. I'll let you think about that one while I go on.
Seriously, is there a more unglamorous cancer than colorectal cancer?! Actually there is. It's rectal cancer.
I can not say the word "rectum," as in "the tumor is located in my rectum" without immediately flashing to the punchline from the highly junvenile joke, "Wrecked 'im?! Darn near killed 'im!" The entire joke is here. As an aside, in relating my history I had opportunity to repeat the word "rectum" to numerous medical professionals. Inside, I was giggling every time, although you'll be proud to know I maintained a straight face.

There will undoubtedly be more of these little observational gems. It may have to be a regular feature. Tomorrow, we hit a little more scientific subject, my dietary approach. But don't fret, there will be plenty of opportunity for continued irreverence.

Can it be a Merry Christmas? YES!

12/25/2014

This holiday season, I’ve noticed people occasionally hesitating to exchange Christmas greetings with me or the family. Or they might qualify it by saying something like, “Have a Merry Christmas. At least as merry as it can be under the circumstances.” All delivered with a rueful smile. I know why and I understand perfectly and it doesn’t upset or bother me in the least. It comes from a lovely place inside that wishes they could make this all go away and make it like it was before The Little Bastard crashed the party. I wish it would all go away too, but it will not get any more from me than what I absolutely have to give it. So there. Pbbbbttttttttt! Take that, you LB.

TLB has not stopped nor will it ever stop me from doing what I’ve always done, which is enjoy those little gifts God puts out in front of you each day and hopes you’ll notice and enjoy. The sunrise (although I’m more of a sunset girl, not a morning girl), the Flint Hills, and the greeting from a friend, neighbor, or maybe a complete stranger. That last one - the greeting from a stranger - my friend Debbie is known for. She has a megawatt smile that people fall right into and she shares it freely with any and all.* The other day, a stranger on whom one of those smiles was bestowed remarked to her that she just made his day. That’s just what I love about a Christmas wish. It’s one of those little gifts from God rife with many things unsaid but certainly offered when we greet each other with Merry Christmas!

Right now, I’m riding down the road in our truck, piloted by our oldest daughter Anna, snuggled up next to our youngest daughter Laura with Joe co-piloting in the front seat. We just drove by west part of the ranch, known as The British (and one of the prettiest places on this earth) and the sun is shining brightly. We had Christmas with my family last night, then all of us squished into one pew at church this morning and now the 4 of us are on our way to Garden Plain to spend time with Joe’s side of the family. Yay! I can’t wait!

Merry Christmas indeed! I get it, my friends. When you call or write, when you text me, when you pray, when you give gifts, when you ask about me, when you offer your help with anything, when you help me knock out my Christmas list, when you do all those things you’re doing, I get it. And I thank you, although that seems so unbelievably inadequate. I am fortunate and I am blessed. And I say it again, MERRY CHRISTMAS!

* While Debbie draws people in, my other best buddy Mary Ann and I both suffer with a countenance that makes people think we’re mad. If I’m honest, I probably deserve my scary reputation, but not MA. You’ll not find a kinder person on the face of this earth. After all, we’ve been best buddies for 26 years and sale partners for a very long time. Only the nicest person could put up with me during sale season. I have heard this scary yet neutral expression we both have referred to as B#$^@ Resting Face. If you want to know more about this unfortunate but all too common condition, here is a brief educational video for you. Warning: contains plenty of swear words.

The Plan of Attack

12/21/2014

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.

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.

My name is Inigo Montoya

12/19/2014

I first knew for sure that I had cancer on Dec. 5. That night, I was in the shower with everything playing in my head, when I started laughing. Don't worry; this was not the laugh where you'd speak to me in that hyper calm voice while the big guys with the straight jacket and the syringe of happy drugs sneak up behind me. It was just that a truly funny thought had popped into my mind and I had to laugh.
Let me back up. Way up. I had read the book The Princess Bride back in college, before it was a movie. I loved that book. It's a wonderful book about true love, plain and simple. True love on a whole bunch of levels, but true love nonetheless. It is FUNNY. Not in a slap-stick way, but in a gentle, beautiful, sophisticated and glorious way. In the book, there is a character named Inigo Montoya. He is a self-taught swordsman who has had one focus since he was a little boy: avenge his father's death. A 6-fingered villain had killed the father in front of his young son, but had spared the son's life. Now, he has grown into that young man focused like a laser beam on hunting down and killing his father's murderer. Throughout the book (and the film), he repeats what has become his mantra, "Hello. My name is Inigo Montoya. You killed my father. Prepare to die." He says it very matter of factly, leaving no doubt in anyone's mind that the bad guy would indeed meet his death.

I swear, the line just popped in, apropos of nothing, but it was just a bit different. "Hello My name is Inigo Montoya. You killed my rectum. Prepare to die." And it as that that made me laugh out loud in the shower.
Inigo finally finds the man who killed his father after a 20 year search. Then he ruthlessly, coldly and efficiently executes the villain who has taken so much from him. If you've not seen the movie, please keep in mind this is a movie with a great deal of humor to it.

So, you see why this line popped into my mind? The focus, the determination, the planning and preparation, the execution, literally and figuratively. Yep, that's it, I thought. Then, after watching this clip, I scrolled down, noticed the funny name of an interviewer in another related clip, and I can't tell you why, but I clicked on it and watched it. And this is when I got a serious chill.

    It was weird. For him, this film was about his father and his fight with cancer. It was a losing fight, but a fight. Now don't panic here. I am not about to lose this one. I ain't even close, so quit that right now, OK? OK. Now, come back with me to when I'm laughing in the shower, and when this line pops into my mind about dealing with The Little Bastard unbidden. And then within a few minutes of that, I hear what the actor kept thinking of as he made the film - cancer. Oooh, weee, oooh (that's my approximation of eery music)!
    At the end of the clip, Mandy Patinkin says the meaningful line for him at the time, 20+ years ago was this; "I have been in the revenge business so long, now that it's over, I do not know what to do with the rest of my life."
    I will be in the revenge business like Inigo, with focus, determination, planning, preparation, and execution. Looks like about a year for this fight, not the 20 that Inigo endured. But when it's over, you can bet your life that I'll know just what to do with the rest of mine!
    God Bless!!!

One day break

12/18/2014

    I can not say enough about the staff here. They are flat out good. I have NEVER felt rushed, or not paid attention to, or made to feel like I was a pain or slowing them down, or any of that. We landed in the right place. In fact, they decided today I needed one additional test, and it could not scheduled until 12/23, no way, no how. That is until my scheduler (I call her the Queen) Trechena Leonard spent the better part of her morning working her magic and calling in whatever favors, and managed to move mountains to get me in tomorrow morning. Then, she couldn't reach me by phone to deliver the update so she literally and physically tracked me way across campus to the radiation oncology department to tell me that I had the appointment. I told her I loved her and Joe is sending her flowers. This is the kind of people to whom we've entrusted our care.
    Now, the "One day break" part. I am taking a break from the positive and semi-irreverent tone I intend to maintain during the course of this. As you all might know, it was staging day. I was hoping to be a Stage 1 or 2, but unfortunately, I'm a 3. A T3N+ to be specific. That means that The Little Bastard has escaped the confines of my bowel wall and is out into my abdomen. I also have 3 lymph nodes affected. But I do NOT have evidence of liver or lung involvement, so that is really good news. I asked the surgeon today how long this might have been cooking. Without hesitation, he answered, "Years." Years, people. Years of no symptoms. Years of hanging around as a Stage 1, then a Stage 2. Years.
    So, for my break, I will mope a bit and store up for the temper tantrum that will put the fear of God into The Little Bastard. Then with cool nonchalance, I'll go right back to attacking him with all I've got. There's a lot on my side, and to tell the truth, I think the docs are excited about the prospects. I'm relatively young, healthy, have no symptoms, no complications, no previous treatment. A clean slate, about as ready for this fight as you can be. And have no doubt, this will be a fight. Tomorrow.
    Until then, you all are wonderful. You would not believe what you've done for me and Joe. I click on here and FB and see your supportive prayers, thoughts and comments and feel it in my being. Forgive me for not responding to each and every one of you as you deserve, but know that you're making a measurable difference.
    Tomorrow brings Inigo Montoya. I promise.

The machine that goes "Bing!"

12/17/2014

Walking over at 7 am to start the day. This is part of the big "Main Building."

The title is from a scene in a Monty Python sketch, in case you were wondering. And that's what I kept thinking about today as I got all the tests that went bing, boink, buzz and every other onomatopoeia you can think of.

    We had lab work, then an EKG. Then we had a consult with the surgeon's nurse practitioner who is a wonderful lady looking forward to moving back to her family's farm when she retires. Off for an MRI. That makes ALL of the noises above, but being in the machine for 45 minutes didn't bother me. Of course, I'm the girl who deliberately locked herself into a friend's locker in high school so I could bust out at her when she came to switch books between classes. Any Dow High grads reading this remember that incident? One of my finest! But I digress. Finished up with a CT with contrast and was done for the day about 4 pm.notice
    All of this will let the team stage me. Where I'm staged determines the course of attack. I found myself, while killing time in the MRI machine, putting The Little Bastard on notice. The conversation went like this: "You feel that, you little bastard? We're getting a bead on you. We're coming for you. This is only the warning shot across the bow."
    So, nothing to report tonight, just a lot of tests. Stay tuned for the full report tomorrow. Joe & I are doing well, very well actually, so all your prayers, thoughts, comments are working. Thank you ALL!

This is what you wear for your MRI. I followed up with a CT scan, which was in another building connected by a skywalk to several other buildings. I thought I might be mistaken for a doctor, but I wasn't and that ruined my fun. Next time, I'm mugging a real doc in a blind corner and "borrowing" their white coat.

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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...

So far, so good!

Random observations

Concurrent Chemo & Radiation Jan 5 - approximately Feb. 20

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

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

Barb Downey

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Concurrent Chemo & Radiation
Jan 5 - approximately Feb. 20

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

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