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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.

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Can it be a Merry Christmas? YES!

12/25/2014

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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.

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The Plan of Attack

12/21/2014

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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.

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My name is Inigo Montoya

12/19/2014

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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!!!

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One day break

12/18/2014

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    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.

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The machine that goes "Bing!"

12/17/2014

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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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We've arrived at MD Anderson Cancer Center

12/16/2014

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    MDA called on 12/15 at about 4 pm. "Can you be here for your appointment 12/17 at 7:30 am?" I asked them to hold it until 5 pm so Joe & I could talk it over. We talked and decided that MDA was our pick. Knowing that Mayo is in MN and MN is known for it's lovely weather this time of year, my friend commented she knew we picked MDA because it's warmer in Houston. I replied I can see the interview and it goes like this:
Interviewer "So, tell the folks out there how you made what could be the single biggest decision of your life."
Me "Well, it's warmer there..." and I give a shrug.
    Anyway, I called MDA at 5 and told them yes, then got online and started making travel arrangements. How did they do all of this before the internet??? By 6, the tickets were purchased and we were leaving for the airport at 4:30 am the next morning. Which brings us to now.
    This place is HUGE. Bigger than HUGE. First, there's MD Anderson itself. By my count, a dozen or so big buildings with many stories. Also here are other huge facilities. Several hospitals, medical schools, nursing schools, pharmacy schools and the like. Go to Google Maps and check out the satellite view and get a hint of what it's like.

The view from our hotel window. None of this is MD Anderson, but everything you see and plenty you don't is a medical facility of some sort.

We got in by noon and started walking around, orienting ourselves and finding the exact place, right down to the reception desk, where we report tomorrow morning bright and early. It's warm, sunny and beats the heck out of what we left at home. Got back to the hotel, Joe napped and I went for a bittersweet run. It was my last run before I officially become a cancer patient on 12/17/14 at 7:30 am CST.
Thanks to everyone back home who's offered advice, love, support and handling of all those things that must be done regardless of what else is going on. Our family and friends are amazing. Joe and I are fully focused on the job at hand. God bless!

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A little background

12/16/2014

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    Back in mid-November, I spent 3 days on the road delivering bulls after our annual production sale. I returned from that trip a little off. By that I mean constipated. I noted the problem and decided that if things weren't right after 2 weeks and some OTC treatment, I would see my doctor. On Dec. 1, I called my doc and was able to get in that day. After taking my history and hearing what I'd done to try to get things "back on schedule," she said it was time for a colonoscopy. Seeing as I'd turned 50 this year, that was already on on my radar for annual physical time.
    We talked a bit more then she asked if she could take quick look. No time like the present, I say. She did a quick and painless exam and I'd say both she and I knew immediately what was wrong. When your doc hugs you, it's never good. She got me in with a surgeon in town the next day. Same song, 2nd verse only he doesn't know me so well, so no hug; only a pat on the shoulder. Uh, oh. He scheduled a colonoscopy/biopsy for Dec. 4 and a CT scan on Dec. 5.
    Let me say right here and now: colonoscopy prep is WAY overblown, no pun intended. I hung out in the house, built a big fire, drank a lot of Gatorade (2 different flavors; I like variety) and watched TV. Pretty nice evening in my book. The next day, I showed up at the appointed time, they put me under and I woke up a little while later. No pain, no discomfort, no embarrassment, no nothing. Get the test if it's time, people.
    Dec. 5 was the CT scan in the morning. This is to check for obvious metastasis (spread of the cancer). By that afternoon (Friday), my surgeon called with the pathology report from the biopsy taken during the colonoscopy. No surprise, it turned out to be cancer. You can click the link if you wonder what kind, but it's in the rectum, 4-5 cm in diameter. And I hate it. I've taken to calling it "the little bastard." As in, "I wonder what the little bastard is up to down there?"
    He did not have the CT results yet. However, within 5 minutes of hanging up with him, the father of one of my best friends called. He happens to be a radiologist. The consulting practice had not read the scan yet, but he said he'd be happy to stay on while they read it. He hung up and called me immediately. Obvious trouble spots will light up because of the very high blood flow and thank God, nothing lit up. The liver looks good, as do the lymph nodes. While not definitive, it's a very good sign.
    I ended up with a referral to a very good surgeon in Wichita, and I took it upon myself to start the 2nd opinion process right away. I had the good (for me but not for them) fortune to know some folks who've dealt with cancer (one with the same one) and they emphasized to me that a newly diagnosed patient gets ONE chance to get it right the first time. Another friend told me what the cancer docs had told their family when at MD Anderson Cancer Center; if MDA were the patients' first resort for treatment instead of their last, they could save up to 85% of those folks.
    So, the best of the best are: Memorial Sloan Kettering in NYC, MD Anderson in Houston, TX and Mayo Clinic in Rochester, MN according to US News & World Report's Annual issue of the best docs and hospitals in the US. The first was too daunting to deal with regularly so I filed for appointments at MDA and Mayo. My most fervent wish was that someone would get to me before the Christmas break as I did NOT want to go through the Holidays wondering (as I said above) what the little bastard was up to down there. Both contacted me right away and we started with the data submission, insurance stuff, and all the other things they need before they'll make an appointment for you. Ding, Ding, Ding! We have a winner! Mayo called me on Dec.8 and had an appointment for me Dec.18-19. I have to say, I was a bit disappointed because my heart was telling me MDA. Don't get me wrong; both are the best of the best. I just had this gut feeling. Well,on 12/15, MDA calls and says they have an appointment for me on 12/17-19. MDA it is!

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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...

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