THE ROTTEN KIDNEY

Good graph day

2012-01-25T06:07:00.001-08:00

Results of Monday's scan are in. Ol' girl Avastin is doing her job. The last sentence on the report is the coolest- "minimal disease present at this time."

OurFavoriteDrug has been in the news lately because she has been determined ineffective for the treatment of breast cancer, or, I suppose her stats in breast cancer don't justify her costs...and I don't know which political party it places me in when I think about the one woman for whom Avastin is working and the struggle she must face.

What if the FDA felt the same about Avastin in RCC? I simply don't care if it's working for everyone else, or if it costs the insurance company more than one life is worth, or if Genentech/Roche has to up their cost to pay their research nerd. It's working for us. So don't mess with it. Leave Avastin alone. There, politico over.

Dad will resume The Juice on February 14th. He's gonna have a little chemo-pole withdrawal, but I'm sure he'll find other things to do.

Goooooooooo Avastin! Be aggressive. Be. Be. Aggressive.

E

- Posted using BlogPress from my iPad

Whoa man, you're spilling your protein!

2012-01-18T06:14:00.000-08:00

Dad's been experiencing some swelling of his extremities as of late, and we've been trying to figure out the cause. Kids don't lie, and last weekend Elliot asked him, "Paw Paw, why's your face like that? so... so... fat?" Ha! His legs are holding water like crazy, and I had a dream that he dropped dead of a heart attack and the sweet sweet irony we'd all discuss at the funeral.... So I called and kinda begged for him to make another appointment with the heart doc ( swelling can be indicative of congestive heart failure, duh...).

Not one one worry, or rush to seek medical attention, or be concerned that he's only wearing house shoes, The Patient finally called his nephrologist ( not the heart doctor, but a doctor all the same) and got an appointment. Dr Hefner was equally concerned with his swelling and asked him to collect his pee in a jug for a day. I guess that's a nephrologist's tool bag- a big jug of pee. I haven't given up my quest for a cardiology appointment, and even pulled in Sisterbaby to make a call as well. The baby in the family usually gets what she wants.

Anyway, it has been determined that Dad is spilling protein, probably because the un-rotten kidney isn't working up to par, and protein acts as a glue to keep your fluids where they need to be. He prescribed a different diuretic and recommended a break from Avastin ( gasp!).
Dad got some quick relief from the diuretic, went to see Baltzy the Oncologist on Tuesday, wasn't supposed to get the Avastin, but did anyway. He doesn't want to go without his Avastin, but Baltzy said that he's got to let his kinda-ok kidney catch up. Dad is glad he snuck in an extra dose, as he doesn't want any false negatives on his scans on Monday. He'll stay off Avastin until Feb 14th, then they'll re-evaluate.

Baltzy and Hefner have both been saying that his heart is fine, and that he didn't need to go to the cardiologist; however, in a sudden strike of divine intelligence, Baltzy came to his senses and told Dad that when two women get together and tell you to do something, just go ahead and do it.

Eye roll.
E

Good Living through Chemistry

2012-01-01T19:48:00.000-08:00

I'm fine ! Really I am.

It's been 9 months since I blogged. Some of you may have been worried about me.... or not .

This is a picture of Erin, and Ezra (born November 15) He's the 5th grandchild. How could I not be fine ! Looks just like me, don't you think?

Erin wrote one time about the spooky white eyebrows. Well, the darker model is back. How could I not be fine ! Not long ago, Dr. Baltz said I looked 10 years younger. He didn't say that I looked 10 years younger than 60, just that I looked 10 years younger than I did a while back.

The Avastin/Interferon cocktail is apparently still working. I guess you saw where some mets were actually gone, gone, gone in the late October scans. We have another set of scans to do at the end of January. More news then. I've been on this regimen for 9 months now and still don't have it figured out and quantified like I did the Sutent. On the week that I just have the Interferon injection, I've come to expect ache joints, and headaches for 3+ days. Debbie says I'm grumpy....nah! On the other week, I get an IV of Avastin + the Interferon injection...and they add a steroid to the IV that totally masks the flu-like symtoms.

Body chemistry is a strange thing. All of a sudden, my blood sodium was low. That's a bad thing and it can kill you or make you crazy as a lesser symtom. I'm monitored so thoroughly that I didn't experience either so I've spent a few months building that back up.

Side effect of Chemo is water retention. Water retention means dilution of your sodium, so don't eat dietary salt, but drink yourself silly on GatorAid. Don't drink any water at all...brush your teeth with GatorAid. I'm sick of GatorAid!

I've been freezing to death since summer....finally we're working on hypothyroidism symtoms. I wish they had started earlier, because it's about to be well digger cold, and my thyroid isn't regulated yet.

I'll be 61 in less than a week. I'm fine...really I am.

SIGNIFICANCE

2011-10-25T20:15:00.000-07:00

Y'all know about me being psychic? Last night I had a dream that the radiologist came out of his dark radiology room, and he took off his tiny little square glasses as he wiped his sweaty brow. He's wearing a long, white, I'm better than you, lab coat with that big monogrammed cursive writing on his left lapel. "Can't find them... they're gone" he says. " Are you sure these are your films, sir?" This is when Dad says "well, I reckon they're my scans..." and the sweaty radiologist says "yes, I reckon they are, and they're gone. gone gone gone. can't find a single one."

Well, it didn't go EXACTLY like that today, but it was close. Baltzy the Oncologist called Mom this afternoon to tell her that Dad left his office before he even ASKED about his scan results. Do you want to be one who is called directly by your oncologist? Yes, of course... but NO! No no no. But yes. This was nice of The Doctor. Anyway, Baltzy said that he had run over to listen to the audio transcription of the scan results, and that along with some mutter mutter jibber jabber, the overall impression was that there was "significant response to therapy." I only practice radiology for my own family members, BUT, using the word significant is, um... significant. Because we radiologists(ok, I'll stop)... use significant in its statistical sense, not just its literal sense. Literally, there has to be a big enough change from status quo to even think about using the word significant. We won't have the real numbers until tomorrow afternoon, but this gives us significant joy. Not only for the stability or the possibility of improvement, but because it buys us three more months of not thinking about it; doing other things.

Dad told me today that he "would probably blog tonight." I told Mom, and she told him "Oh, Erin said you PROMISED you would blog tonight." This, set off the rebellious spirit I share with Dad, and pretty much cemented that he would NOT be blogging this evening. I understand completely. It's my blog anyway.

I'm 9 months pregnant- at least SOMEBODY is getting to celebrate.
Cheers!
E

2011-10-07T09:20:00.000-07:00

Oh Hellew. I know. It's been months. Dad's still wearing Hawaiian Razorback shirts and playing the banjo. There's not much we can do about it, as the man has cancer. I wonder if Steve Jobs' kids were like "Daaaaad! You're launching the ipad today, DON'T wear that same black turtleneck!" while he finished his breakfast and flipped them off as he walked out the door. I wonder. I'll come back to him later.

BIZNETH: Just called Dad to ask when he has scans. He said "uuuuuuuuuuhhhhhh, Octooooooooooober, ummmmmmmmmmmmmmmmmmmmmmmmmmmmm twenty.............ummmmmm fifth. Yeah. 25th. Let this be a sign of the times. We used to know the day, scan time, and and results appointment time three months in advance. It used to be written on my calendar with a little scary face next to it ( yes, I illustrate my calendar with emotion), and now I guess we're just used to it.

Dad's still getting juiced with Avastin/Interferon every Tuesday. He still gets some headaches. His hair is turning darker in a strange Benjamin Button sort of way. Most comforting is that his eyebrows have returned to their original color. 'Cause white eyebrows are disconcerting. There has to be some evolutionary biological reason for dark eyebrows, as when they aren't, your cellular-level guts tell you somethin' just aint right. Gives me the shivers, and I'm glad they're back.

STEVE JOBS: His passing affected me. Not because I am a lover of his brilliant innovations. I appreciate small bits of brilliance in my little microcosmos every single day. It affected me more because I think I might know what his family is feeling. Pancreatic cancer is like RCC in that it has dreaded stats. And I'm sure that his family, like ours, put his cancer up on a shelf and continued on with their lives. They took cancer down every three months, dusted her off, then put her back up on that shelf to keep on keepin' on. He went to work, provided the framework for brilliant minds to come up with brilliant new tools ( anyone seeing the connection between Apple Inc. and American Restoration Tile? I know... uncanny isn't it... Who DOESN'T need a custom fired, historically accurate in color, unglazed porcelain three quarter inch square edge tile???? I know, right???? )
And then it all fell apart. Steve Jobs afforded himself the best medical care, I assume. If anyone has access, it's that dude... but really, at the end of the day, while Steve Jobs was kind of a big deal to a lot of people, he was just somebody's husband, and some kid's dad... just like mine.

I asked Dad if he had any business to report to the blog. He said he would not divulge anything, as I would steal his thunder. He did tell me about some dude at Kinko's that thinks he is his cousin, and asked about our plans for the weekend, etc.....

Our cancer is up on the shelf. We know she's there. We'll get her down on the 25th. Hope there's nothing to see.

Tra la laaaa
E

Two years

2011-07-03T20:01:00.001-07:00

When you google survival statistics of Stage IV RCC, you are hard pressed to find anything exceeding 5 months.

He's at 24.

The only battle he lost this week was against a rogue wave. It took his swim suit and his dignity.

He quickly recovered both.

- Posted using BlogPress from my iPad

We love birthdays.

2011-06-10T15:24:00.000-07:00

This is a big day for me. Not only is it my 59th birthday, it's also my last day of work as a teacher. Twenty-one years. Anyone connected to a school knows that teachers do amazing work. Teachers are responsible for lessons, yes, but also the care and nurturing of the students. The kids come in all shapes, sizes, and conditions. It is exhausting but satisfying work. Anyone connected to a school also knows that the hours between bells are just the stage show; many more hours of creation, revision, and rehearsal are required to support the "student contact hours," and "summers off" is really only enough time to recover and get back up to do it again. Thank every teacher you can find! An explanation of why I decided to retire isn't really necessary, is it?

It's time. We can pay for COBRA insurance until I turn 60 in a year then I can sign up for retired-teacher insurance for both of us. A lot of my fellow teachers assumed that I decided to retire because they thought Bryan must be doing worse. Actually, it's because he's doing so well that I knew I wanted to leave now. We want to go where we want, when we want, and stay until we're ready to leave. We really don't have a bucket list, but there are places we've never been: the Caribbean, Seattle, Maine, Minot.

Erin and Shaun are expecting their third baby in November, so we're thrilled to be able to offer them some extra hands since they'll be out-numbered. I look forward to visiting Eli and Emily at Roberts Elementary School which is between our house and "town." It will be easier for me to spend time with Daddy at Presbyterian Village, attending the monthly luncheons, birthday parties, and other special occasions in addition to just sitting and visiting. I also intend to learn all I can about the tile business so that I can be helpful. Bryan is obviously the tile guru; I want to help with logistics, organizing and finding the stuff he loses!

This morning, my friends at Mann gave a "Bon Voyage" party for Linda Berman, who's retiring too, and me. Dr. Marian Lacey, who was principal at Mann when our kids were there, came. So did Suzi Davis and Stella Hayes. Stella wrote a poem for us. Pat Boykin read "The Road Not Taken." We had a yummy spread of fruit, dips, and little ham biscuits. The cake was crafted by our very own Jamie McKenney (Jamie's Custom Cakes 501-944-3796)and was beautiful. I was given a gift certificate for some spa services :). Lots of people said very nice things; it was a lovely way to leave.

I had already turned in my grades, counted textbooks, cleared the walls and shelves for painters, and given away my desk and everything purple. Today I had the joy of turning in my keys. Let the party begin!

Debbie

I forgot he had cancer.

2011-05-28T09:17:00.000-07:00

Do ya'll know about the redneck pool? The pvc paradise? The oval oasis?
It's one of those mildly embarrassing above ground numbers that has poles and a werbely ladder that you have to check your pride to put in your yard things that you find in the big box at your favorite discount retailer. You've looked at them.

It's for us who can't afford the in-ground options. For those of us who want a vat of chlorinated water to bathe our kids in during the summer so we won't have to stoop over the bathtub. It's for me.

Mom and Dad have stepped over the 'us n them' line and dug a hole in the backyard. So... natch, I called dibs on the redneck pool.

Now, how is lil' ol ME gonna get that big old pool out of the garage and 200 miles north to MY yard???? Ask Dad.

Mom said it might be too heavy, as the sand filter alone weighs 400 pounds. She thought he might not want to do it, and maybe I'd have to settle for the smaller 12 foot pvc paradise instead ( yeah, they have two.)

Well why would Dad not feel like hauling this thing up a hill and into a truck and driving it to my house? That would be weird.

It'll be here in a couple of hours. Ha! I forgot he had freakin' cancer. So does he, he says. Especially with Avastin/Interferon, he feels good. With Sutent, he had his calendar of symptoms to look forward to. Right now, all he's looking forward to unloading the 400 lb sand filter.
If he's not going to play up the cancer card, neither. am. I.

Now imagine me floating on my back spitting water into the air like a fountain. In a tank top and cutoffs. Don't spill my drank! That's how rednecks swim.

60 days on Avastin

2011-04-28T20:27:00.000-07:00

Hellew there.
Dad got scans this week after 60 days on Avastin and Interferon. I don't know why I can't get as excited about This combo as my old friend Sutent. She's performing well... She shrank or stabilized all the current metastases, and she apparently needs a cumulative effect for her best result...and her side effects are lots more tolerable than sutent's.... I guess I should give her a better rap. She's alright, Avastin with Interferon,she'll grow on me.
From what I can tell, worst side effects are nose bleeds and headaches. I really need to improve the umph of this post. I'm coming across crabby.
We did get a really really detailed report from the radiologist. We love details and graphs and this report had lots of those. It talked about all Dad's innards in great detail, which is strangely fascinating for me to read.
So, though I'm dull, the remarkable piece of information that you should take from this post is that we still have stability. Maybe we're getting used to stability and forgetting that stability in itself almost two years out is not unheard of, but still great. Nothing to be dull about. So sorry, Avastin/interferon, we don't care that you got an A. And now I directly quote my mother: "Good grades aren't rewarded, they're expected.". Fall of 1989.

I expect much,
E

Tile Party

2011-03-15T20:11:00.001-07:00

2011-03-15T09:53:00.001-07:00

I'm sitting in the atrium of Ceasar's Palace, here since 6:30 Vegas time, afflicted with a case of the grownupness- my body so used to Fayetteville time and the inconceivability of snoozing past 8am. I've enjoyed 8 dollars worth of coffee AND figured out how to post to the blog via email, via my crap iPhone. This iPhone I used to call my wizard is now dead to me. I've seen the other side....the pretty green grass yonder.... THE iPAD 2.

First things first. We arrived in Vegas on Sunday afternoon. We promptly took the worst smelling cab Vegas had to offer to the hotel, and had an awkward check in as two young women and a white-haired gentleman with money.

Even more awkward was when Rach asked if our room could have one king bed instead of two beds because were sisters and we used to sleep in the same bed a long long time ago and then we got married and our husbands told us it was weird to want to sleep in the same bed as your sister on vacation instead of with your husband so in an act of rebellion and just because we want to, could we just have one bed instead of two???? The nice man just said " so a king non smoking for you, sir... And a king non smoking for you two ladies.". We all nodded and smiled.

We then embarked on our journey to find the sands convention center ( maybe half a mile the way the crow flies) . It took us a good hour lost in casinos, 15 dollars in monorail tickets, a northbound monorail mutiny in favor of the southbound train instead "Dad! Hurry! get off get off! No! Wait! No! Stay on! Stay on! Wait.... I don't know!", and a favor from a man on an all-terrain vehicle(twice!), we made it.

After the journey we find out that the rumor amongst the tile world is that "the guy that rented that space" is either (1) dead, or (2) had some kidney problems, so they brought a forklift and took away all the materials he had shipped here in a cargo freight palate box and put it somewhere in the 1 million square foot Sands Convention Center.

So dad did a little tap dance to prove that he is, in fact, alive.... They found his palate, an we got busy setting up our display. He did not have to submit a urine sample to prove his kidney function, and we are thankful.
People from all over are coming to see Dad, remarking on his beautiful daughters, and give him manly handshakes with half-hug pats telling him, genuinely, that they're glad to see him.

Back to business...Dad's been hauling around this ugly heavy laptop in an even uglier attaché. Aaa taaaaa shey.
We have smoothly convinced him that he needs an iPad. Handily, there's an Apple store in our hotel?! Wow! We...., I mean he, bought himself a fancy little first generation iPad last night. We're going to play with his today and convince him to buy three more.....
He wants to buy three more, he just needs to know it's ok. Oh, it's juuuuuust fine.

We're having a good time. Not just because Dad is buying us dinner and teasing us with the faint possibility of iPads... just because we're having a good time.

Sent from my iPhone(crap)

2011-03-15T07:37:00.001-07:00

2011-03-15T07:37:00.000-07:00

2011-03-15T07:36:00.001-07:00

2011-03-15T07:36:00.000-07:00

I need more hours in my days!

2011-03-01T19:41:00.000-08:00

My new Franchi..... finally got here. Debbie said something about "the last one" whaaaat?
It will be all ready for pheasant later this fall. Can't wait to take it to the range and knock down some clay pigeons.
Maybe it's my lucky day....I bought a Megaball ticket to $76 Million... I could stand it.

Y'all saw Erin's blog....well, I was the recipient of a chemistry cocktail today! I haven't quite figured out the PV=nRT of that yet....but it's in there, or at least my kids are sure that it is.
I took my first intravenious Avastin today along with an injection of low dose Interferon.
Ten hours out, not feeling bad at all.... that's a good thing.

Amazingly, the damned sore feet are as good as they have been in 15 months. I need to massage my data and Damn Sore Feet logs vs. Sutent dosage , but first brush says that probably 6 weeks ago I got a clue that something was different with the Sutent....the feet were not going to their peak..... I was paying attention to the number of bad days instead of the magnitude... the last round, they never got above a V (roman numeral) .

What I expect tonight is flu symtoms... fever, chills, aches and pains. I'll trade sore feet for that any day. The IV took longer than normal because it was the first time, it will speed up over the next couple of times until it's down to about 30 minutes. Dosage is Avastin every other Tuesday, and an injection of Interferon every week at the same time. Blood work and see Doctor Baltz every week.

I happened to mention a little angina when I was trudging up the hill in the snow and carrying firewood to the porch last week. Doc says, "Damn, are you gonna have a heart attack while I'm trying to control this cancer?"
"Who's your cardiologist?" Whaaat? you don't have a cardiologist? So he called a friend of mine, Dr. Ben Johnson. Got me right in.... we're gonna do a catheterization on Thursday morning to make sure things are as they should be and fix them if they are not. I think my ticker is ok, but I've been on some pretty strenuous chemistry for a while and I haven't been doing the gym like I did before. I promised Joe Henry that I'll get back to it... I have missed our bike rides to nowhere.

About enough for one day, don't you think? I'll go to work tomorrow and get a little rest.

Thank you all for the support of my family as we trudge through this unplowed ground.
I'm fine....life is good. Daffodils are up, pear trees blooming, my bees are active.

Love you all,
Great Speckled Byrd

2011-02-25T18:37:00.000-08:00

The space shuttle blasted off for the VERY LAST TIME yesterday. NASA failed us in July when we were there and they rescheduled the trip. And today we find out that SUTENT has failed us. Failure. Failure. Failure.

I shouldn't be so hard on Sutent. She (I give anything with remarkable strength, tenacity, and wicked side effects a feminine personification) has been good to us. She's given us a chance to be in the lucky crowd, the chosen ones for whom the drug works, the elite class of stable disease...

Not today. Today we're like those other people. People who are told that they have "failed" a drug. We're not sure of the reason, but it doesn't matter. We are on to the next drug cocktail...Avastin and Interferon. Sutent is tired of blocking the blood flow to the branching arms of baby metastases and she's tagging off to her bitchy friends to take the lead. You've been great Sutent, take a break. Have a beer. Enjoy your vacation. We may need you again later.

Dad's scans today said he had "slight growth" in his lil' lung mets and "a couple of new small nodules ...along the right hemidiaphragm" and 3 small nodes in the paracaval region near the "expected region of the renal hilum which are new and felt to be metastatic." You grow something new and you're a failure. Tough room.
It's not that we didn't expect it, we knew it would happen eventually. Just sucks when you're no longer the lucky bastards.

We're a family of problem solvers. Question answerers. Dad's first response to the spectrum of child interrogation was a chemical equation.

Why does the toilet flush? Because, honey... PV=NRT.
Why can't I live at the mall? Why? Because PV=.....NRT.
Why does the tile go in the kiln green and come out red? Simple. PV=NRT.

Low and behold, in 11th grade Chemistry, Mrs. Dyer wrote the answer to all my questions on the board?!

My mouth dropped, my eyes wide... I was nodding.... My dad in-ven-ted that! Like oh my gawd, yall! My Daaaaaaaad seyyyyyz thaaaaaa!

And I counted the minutes 'til dinner when I could have a real answer to the question of "didja learn anything?"

So why... if microwaves work, and space shuttles fly, and for God's sake, my cell phone knows where I am, and drugs exist that make sad people happy! Why can't there be an answer for RCC?????

NED= RCC-{[(26*sumA)+B)]}/9

There. Just in case.

Blah,
E

Where've you been?

2011-02-11T18:49:00.000-08:00

Friends and family came to the porch to help celebrate Bryan's 60th birthday. We had good food, a fabulous cake, and lots of people. All of our kids and grandkids were here. Mike and Diana Roller and Talmon Preyer came from Mountain Home. Jerry Smith and his wife Brenda came. Jerry and Mike were Bryan's college roommates. Don and Lee Bell, Jeff and Sarah Koenig all came from Northwest Arkansas. Gail and Vic Sutcliffe came from Frisco, Texas. Terry Joe Shaw, Joe and Mary Helen Henry, Cliff and SanDee Clifton, Carl and Judy Chipman were the locals. The weather was good enough to sit on the porch, and we all visited until late.

On January 20, we flew to Honolulu where we took off on a cruise around the Islands. It was warm, beautiful, and relaxing, a time apart. We came back to Little Rock just in time for all these snow events.

Medical news? Not much. Bryan took an extra week off of Sutent during the cruise to be sure he could walk! He will have his next scans on February 24 and his appointment for the results on the 25th. The nurse asked at the last doctor's appointment whether he was anxious about the upcoming scans. No. Not really.

After the trip to Hawaii, Bryan went to the Greater Philadelphia Historical Home Show. He stayed in the hotel where the show was so that he would be close by. He flew back home during the Super Bowl, arriving back home about 10:00 pm. In March he's going to Las Vegas to Coverings, the annual trade show of all things for floors. Erin and Rachel are going along to be his beautiful booth support staff. I think they're actually going for the shows, food, and time away from their day jobs. (I'll be stuck in the classroom, having used up all my PTO for the year.)

I tried to post some Hawaii pictures, but my computer froze. Picture blue Gatorade--that's the color of the water. Feel 80 degree air, not humid, just a slight breeze. Hear cliche Hawaiian music--it's real. Now, this is how much I love the Gulf of Mexico beaches: they're better than Hawaii's. Really. Best news yet: a new airline is flying a nonstop flight from LR to Destin for $89. I'll be on it soon.

Time for a new drug?

2010-12-27T19:41:00.000-08:00

I was at a seminar a week or so ago about reversing the tolerance (the drug loses effect over time) to chemo drugs. It was about non-small cell lung cancer, but I was intrigued. I did a little PubMed (google for scientific articles) research. Briefly, a class of drugs called histone deacetlylase inhibitors (HDAC inhibitors or HDIs) can reverse the tolerance to receptor tyrosine kinase inhibitors (TKIs) (of which Sutent is one). They actually seem to work with other chemo drugs too, but most of the research has been with TKIs and HDAC inhibitors. They're doing clinical trials with a few types of cancer, not RCC to my knowledge, and the results are promising. Vorinostat, an HDAC inhibitor works with Temsirolimus (not a TKI, but an mTOR inhibitor) on RCC cells in culture (in a Petri dish). There are some other HDAC inhibitors that worked extremely well in culture for RCC, but they are not commercially available. The best part is that there are HDAC inhibitors approved by the FDA. Maybe it's time to start a clinical trial for HDAC inhibitors with Sutent in Little Rock, or maybe just go for off label use of a currently approved one?

If ifs and buts were candy and nuts....

2010-11-15T19:45:00.000-08:00

we'd all have a Merry Christmas. I'm going on record BEFORE the ifs and buts as to not be cliche' if and when we are faced with ifs and buts. You understand, I'm sure.

So for the past 8? weeks Dad has gone relatively rogue with his Sutent doseage. By relative, I mean that he didn't dream up this protocal, he's just trying a different doseage schedule. Now I will give you information you didn't even know you wanted on the titration and permutation of sunitinib malate.

The Sutent people say that you should take 50mg. daily for 4 weeks, then take 2 weeks off to clear the toxicity out of your body. Since its breakout in early 2006, there have been modifications to the dosing schedule. Huh... look at that... dosage is not spelled doseage... though it should be. Thanks, gergle.
It is very individualized treatment as far as how side effects hit you and how much Sutent holds off your nasty tumor spread. So.... Dad started on 50mg 2 weeks on, 1 week off back in August of 09. Side effects in his feet got pretty bad.

He decided to try 50mg 1 week on, 1 week off, give or take afew days, to accomodate his busy social calendar, to see if that alleviated any of his foot symptoms.

So eight weeks ago, we... and by we I mean him, but with our full support, decided to take the risk of a decrease in dosage. The risk is that the decreased dose does not hold off metastatic growth. Remember, that's the gold medal...no growth... status quo. We, and by we I mean him, but with our full support, find out IF the reduced dose was worth it, on Friday the 19th. IF he still has stability, then of course it was worth it. BUT... if he does have growth, will we say the same thing?

I say yes. It was worth it. You know the feeling that you get when you know that something might hurt? It's almost worse than the real thing... the anticipation of the hurt?? This is pure assumption on my part as to its application of Sutent feet, but... I know I'm right. :)
You're placed on this drug that puts you in anticipated pain. You can measure it by the calendar. You know it's coming. Like when you think about work on Sunday afternoon, you might as well call your weekend over.... I think that part of the pain of the sore feet is knowing that you're going to have sore feet. There's a certain level of psychological pain in enforcing your own anticipated pain, by taking that pill every evening. Psyching yourself up to tolerate the pain may be as lonely and depressing as dealing with the pain itself.

And I think there should be a better description than "sore feet." I get sore feet when I've been standing in fantastic peep-toe pumps for too long. I imagine I'd get sore feet if I ran further than from this desk chair to the refrigerator (BUT THAT WILL NEVER HAPPEN?!) These aren't sore feet. These are dysfunctional throbbing nubs on the bottom of your legs. These are I'll-sit-here-real-still-'cause-my-feet-don't-hurt-and-won't-move-because-when- I -do- they-hurt- real-bad feet.

So, Dad goes from the anticipated pain cycle to the let's see approach that most of us are still afforded. WORTH IT. He went pheasant hunting. Which is still a little strange, I think, from the man who can't look at a turkey carcass and cries when dogs die ( thenthitive thoul... we love him). I have seen him regularly over the past 8 weeks because of the integration of Razorback Football into his and Mom's Maslow's Heirarchy of Needs.

I'm the empath of the family. And I feeeeel he's a different psychological creature since the change in dosage.

Maybe it was shooting all those poor pheasants looking to get the hell out of that corn field. Maybe it's the regular visits with my precious face and witty charm over the past 8 weeks. Maybe its the new table he just got to buy Mom so everyone would have a place to sit at Thanksgiving. MAYBE IT'S BECAUSE HIS DAMN FEET DON'T HURT as much, and he doesn't have to dread them hurting, and he has some shred of percieved control in the destiny of his pain cycle...

Again. Worth it. If on Friday we see growth, I'll still say the same.

Lovey, E

Sidenote: I think we should change all medical literature to call it 'metadynamic' growth instead of 'metastatic.' Isn't the juxtoposition of static and growth in the same phrase an act of hypocricy? Not to be confused with Hippocratic? Think on it.

The Rotten Kidney takes a week off

2010-10-20T19:40:00.000-07:00

Hey y'all.

This week the keeper of the Rotten Kidney is on vacation.
Earlier this year, my brother, Barett, invited me to go along with him
on his annual trip to the opening week of Pheasant season in Kimball,
South Dakota. Not having been a hunter in the past didn't stop me and so
over a period of a few months I have now transformed myself into what appears
to be a Cabela's hunting clothing model complete with a piece of art that is
in the form of a 12 gauge shotgun made by an obvious artisan in Italy. I did some trap shooting with Bobby Raney and so now I can load a shotgun and hit a clay target from time to time.

On Sunday we drove 900+ miles to Kimball and joined with a couple dozen other hunters from Louisiana, Arkansas, Arkansas , DC, and TX for a week of hunting wild pheasant
at the HorseshoeK Ranch. Some of these guys have hunted wild pheasant for decades and some for only a few years, but they are willing to holler at me and help me learn how.
The main thing is to not pull a Dick Cheney and shoot your fellow hunter. You will see by some pictures that I actually can hit a flying pheasant too. Those seasoned hunters don't mind letting you know when you missed too....AFTER they shoot your bird for you.

Remember when you were 20 and largely indestructable? Well I'm 20 with almost 40 years of experience and still get that indestructable feeling now and then. On Tuesday afternoon, after hunting , four of us jumped in a truck and drove like hell for 250 miles so we could see Mount Rushmore before dark.... eat a steak on the western edge of South Dakota... then drive back 250 miles to the Horseshoe K so we could get up and go hunting again on Wednesday..... Piece of cake. Got the picture.....got the t-shirt.

We got back in about 2 Am

but apparently didn't wake anybody up...they were all up anyway making their first bathroom run. Old guys get up in the night for some reason !!!!

On the way back on Saturday, they dropped me off in Fayetteville so I could meet Debbie for the Arkansas/Ole Miss football game. There was a lightning delay during the 3rd quarter and we retreated to Erin's house. I got to play with Ethan and Elliot for a while before they went to bed. We stayed with Matt and Rachel so we could sleep in. 10AM Sunday .....stretch / well rested.

I had a great time. Thanks to my brother, Barett, for introducing me to pheasant hunting. Now that I have all the stuff, it will be much, much cheaper next year... NOT !

Now i'm in Austin, Texas. I'm exhibiting tile at a nationl meeting of the National Trust for Historical Preservation. I'll be home Friday night in time to head for Fayetteville for the

Arkansas/Vanderbilt game.

I'm managing the Sutent.... trying to control the sore feet and balancing treatment and quality of life with the modified protocall. New scans will be in late November. Life is Good!

October was busy ! Happy Halloween y'all.

Bryan

Goin' Rogue

2010-09-29T20:02:00.000-07:00

Hey Guys, It's Fall. I see that Erin has called me out.

Busy summer...lots of same ol' same ol'. Now we're into Fall and why not get out of the same ol' same ol' mode.

You've heard me complain and complain about the sore feet issue side effect. I even started an analysis so I could track the severity of sore feet and track when it was happening within the parameters of the Sutent dosage. I called it the Fujiama scale, but never came up with a suitable acronym. The schedule yielded 10 good feet days followed by 10 sore feet days. I talked to the Doc about it to see if I could draw any conclusions and he said "You're over anal-izing this".

Soooooo. I'm going a little Rogue on the Sutent schedule. Instead of the 2 weeks on - 1 week off. I'm trying 1 week on - 1 week off. This essentially lowers the dosage 25%. This schedule is not unheard of...it's not original to me... we'll see how it goes. Everything is on Google..for better or for worse !

Based on the above sore feet index, I think it may change the sore feet index to 10 good feet days and 4 sore feet days; or, it might essentially eliminate sore feet. Now THAT is quality of life ! Scans come up the third week of November...we'll see if I got away with it. In life, we are not used to settling for a draw. In RCC , playing to a draw (stability) is like winning a medal.

We've had a busy Fall so far. Football is back! Our opportunities to go see grandbabies in NW Arkansas and take in a Razorback game (in that order) is upon us again. By the way, we get to see Rachel and Matt as well as Erin and Shaun.

We had a game in Little Rock too. We invited Don and Lee Bell down for the game and a night at Debbie's Bed and Get Your Own Breakfast. In 40 years....they had never been to a game in Little Rock. We had a good visit and got a game in the win column. They're like my Dad... he only saw games in Little Rock and never saw the Hogs lose a game.

I'm still working most days. I've learned how to go in late...even without a reason! Now all I have to do is work on leaving early. I've had excursions to Emily's school for grandparents week and a couple of lunch dates with Eli at school. Life is good. I'm fine.

Bryan

SOMEBODY NEEDS TO WRITE A POST

2010-09-28T22:14:00.000-07:00

No no, not her.... the guy creepin' in the background.

Bwa ha ha ha ha ha.

Possible Titles:
1. Going Rogue; 1:1 baybeeee!
2. This papercut on my finger really hurts.... must be the Sutent.
3. I never leave the house without my polarfleece jacket.
4. Why do I wear little white ankle socks with my sandles?
5. No I'm not in liver failure, I spent $84,000 dollars last year to look this yellow.
6. Remember when I tried to stop drinking Diet Coke? Pfffft!
7. That's all I can think of, Dad.

Don't disappoint.

No pressure.

Lervy dervy, Erv

Oooooh!

2010-08-28T07:15:00.000-07:00

He's strong.

Look For Cardinals and Live Like Bryan

2010-08-23T19:27:00.000-07:00

When "we" first got the diagnosis of RCC, I thought I would have penned a fantastic eulogy by now. Google stats aren't encouraging. It've had everyone in tears, but leaving with a sense of goodness and calm and acceptance and peace. Have we run out of things to talk about? Hell no. Besides, this blog is what I do when my laundry pile becomes daunting.

We just need to talk about larger things, weightier things. All the comments have ceased to exist. My followers are bored. Therefore; I now switch to WEIGHTY PHILOSOPHICAL PERSPECTIVE. I might stay in this mode for a while. I might not.

I called around for suggestions for this evening's entry. Dad agrees with the switch. I'll get the latest scan stats out of the way. I'm afraid now that I'm setting up the latter part of the blog too grandly, and I hope that I don't let down.

Anyway, Sutent Stud went for scans on the 19th. Everything came back stable. The radiologist got a little careless on his report, and reported the size of one met (the scrawny one) as 1.2 x 0.1 when it measured in at 1.2 x 0.7 three months ago. CHECK YOUR WORK, SUCKER! Now, many people don't appreciate math like we do, BUT, if those numbers were correct, and not a typo, then that woulda been an 85.714% reduction in the scrawny met. I mighta wasted my money and taken Dad out for dinner because his met shrank?! Hmmm. Baltzy said it was a typo. I'll forgive the radiologist in time.

Mom thinks its funny that they always report that the right kidney, is, infact, still missing. She also says, or used to, that "God is Math." I don't really know what that means, but it got all of us kids thru some calculus homework back in the day.

WEIGHTY PHILOSOPHICAL PERSPECTIVE

I think about the bigger picture alot. Dad told me that today while he was driving to work (before he helped himself to a largish spread of breakfast items at 1pm in a Waffle House- why the hell not?!) his thoughts wandered to "well I wonder who died today?"
I do wonder- how many people died today? Some of them might not have been noticed... how sad. Some of them will be missed profoundly... how sad. Some of them were thankful that their suffering was over... how sad. Some of them decided that the best bet to stop their pain was death... how sad. Where am I going with this? Death, the universal equalizer. It's going to happen to us all. This is getting cliche'.
I'll switch.

Rachy's input was about cardinals. The cardinal is Dad's favorite bird. I don't know why we know this, or when it was spoken, but it is known. Hell, maybe it isn't even true?! She said that when she sees a cardinal, she thinks (now), that the cardinal will remind her of Dad when he's gone (not gone like- in the bathroom, like gone-dead). I have had the exact same thought when I've seen a cardinal post-diagnosis. Rachel added that today, though, she realized that when she sees a cardinal, it already makes her think of Dad, and that she shouldn't have to save it for when he's dead. We've already picked out our posthumous icon for him. That's creepy, not philosopical.

I'm not a philosopher, apparently. I can't get my words out. Bottom line, is that lots of people are suffering. Lots of people are living in a body that will fail them tomorrow. We're just fine. I'd say we're better than fine. He's just fine...he'd say better than fine. Perhaps the best measurment of the fine-ness is that he woulda stopped for a largish spread of breakfast items at 1pm at Waffle House two years ago. It had nothing to do with "livin' it up" just in case. He's always lived like that.

Look For Cardinals, Live Like Bryan.
Good thing I'm not a philosopher,
Erv

Blast Off

2010-07-25T17:41:00.000-07:00

T-Plus 367.
We ended up in Orlando this year. We are beach people, so inland is a little weird.

We got on the dad-might-die! kick and decided we would help fulfill his dream of seeing the space shuttle take off. It's supposed to be fantastic to watch.

You see, what Dad really wants is to fly IN the space shuttle, and that costs about 20 million dollars, and they've got Sutent (and family vacations!)to buy instead.

So we're in Orlando. 367 days after he got The Rotten Kidney cut out. NASA cancelled the shuttle lauch WITHOUT consulting us. We're having oreos instead.

And now... my symbolic prose juxtaposed to real-life pictures to make said pictures more interesting and um, symbolic. Yeah.

I started this post on Tuesday of last week. I can't come up with the proper reparte to sit by this awesome trilogy.

I was going to say something about jumping in, and trust, and riding the wave, and and the ripple effect of everyone on everyone else, etc...etc...

But I'm tired of it. Really tired of it.

Blah blah blah. Back up. If you look at your life in still-shots, you miss the view- because it's all out of context. Watch the movie instead. This movie isn't about cancer. It's about my Dad doing a cannonball. He happens to have cancer.

Photo and video editing at www.OneTrueMedia.com

Love, Erv

Hmmm

2010-07-06T18:26:00.000-07:00

Sam and Lish went to get their kids from the "other" grandparents this weekend. They stopped thru at the house for a rest stop and a visit. It didn't hit me until they were gone.
They made the same trip last year. They were about 45 minutes out of Fayetteville when we got the call. So an hour after we knew our dad got The Cancer, we were all able to go stuff our faces with cheese dip and drink beer. It's what we do.
Around that table, we agreed that:
1. We wouldn't treat him like a freak
2. We would keep eachother informed
3. Rachel and I drink more beer than we should
4. Alicia knows alot more about molecular chemistry than she should
5. Matt and Shaun have, unfortunately, lived this thru, and they have excellent insight.

So we're here a year later. Some days it feels like everything has changed, then other days it feels like nothing has. We leave for Orlando in two weeks. I was right, about a year ago, when I said that the beach is our reset point. And a year from back then, I predicted that Dad would have been on Sutent for a year and his hair would be all white. Damn, I'm good. Not really. I've always been a wee bit psychic ( no, really, I am)and not knowing that Dad had a Rotten Kidney really pissed me off. I shoulda caught it at an earlier stage.

So Happy Day-You-Figure-Out-What-You'll-Probably-Die-Of-Day, Dad! That was rude, huh? . But it's the truth. You know you've thought of it. Morbid yes, but one of my favorite things to ask people.

I think I'll go choking on a big piece of meat. Just a hunch. That's why I don't eat meat alone. Really.

Love, EAB

Sutent = PFD

2010-06-20T17:05:00.000-07:00

Bryan surprised me for my birthday by making reservations in Pensacola Beach for a short trip. We just had to check on our beach! We were prepared to find an ugly mess but, instead, found beautiful white sand and clear water. After a detailed search, Bryan found a few raisin-sized "tar balls." I guess I was expecting soccer ball-sized blobs. It was hilarious to watch the official beach cleaners in their haz-mat booties, gloves, etc. Our favorite was a big guy who had a little broom with a dust pan on a stick. He was NOT working up a sweat.

On one of our few outings away from the water, Bryan located a West Marine store. He bought a few t-shirts and got a new catalog. He loves boating paraphernalia as much as he loves boats. In the catalog, there's a whole section on PFDs (personal floatation devices). There's a PFD for every purpose: water skiing, fishing, off-shore craziness, canoeing, etc. The most expensive jackets are the ones that will bother the fisherman the least. It's there to be inflated if necessary, but most of the time, it just feels like bulky suspenders. Good to have but not in the way. Then there are the jackets that include a huge tether; it will inflate itself if the wearer is flung overboard by a big wave. In the fine print in the catalog, the good folks at West Marine state that all children under 12 should always wear a PFD, and if everyone would wear one, there would be fewer water-related deaths. Stick with me. We English teachers love a good metaphor.

We saw Dr. B for our tri-weekly Friday night sit-in-the-waiting-room date. We really should open a bar next door with those radio-controlled devices that let you know your table is ready. We'd make a fortune. Anyway, when we finally had our audience with the good doctor, I asked why the transcript of his latest scans only discussed "representative" mets instead of enumerating all of them. Bless his heart, he really does do his best to answer our questions without scaring us. (Too late.) Here's my synopsis of the answer:
With other types of cancer, patients expect to hear that they've been cured or are in remission. My brother Larry's leukemia was wiped out by the bone marrow transplant. No more cancer cells. My sister Cheryl's breast cancer was eliminated by surgery, chemo, and radiation. Gone, gone, gone. With RCC, however, success is measured by Progression Free Disease. We're not used to playing to a draw. We don't like ties. Five years ago, a patient either got well fast (probably because there was no metastesis) or died. He fell off the boat with no PFD.
The scan transcript shows that Bryan's cancer is being controlled and he has every reason to expect that Sutent will continue to maintain PFD. We don't know how long that will be. When and if it does fail, there's a line-up of other drugs waiting to take Sutent's place. Kidney cancer also seems to be the current darling of research, resulting in amazing new drugs that weren't available five years ago. Even more miracles may be around the corner.
The kicker is the side effects, of course. We love the white hair. The fatigue is manageable. The sore feet create misery for a week or so then get better, and he goes about his business. The side effects are the bulky old life jackets that keep us from moving our arms. But Sutent and its cousins are the tethers that keep us from floating out to sea. We love boating paraphernalia.

My Medical Degree is from Google...

2010-06-05T14:17:00.001-07:00

And this guy's is real.

I finally got to meet Dr. Baltz on the Friday before Memorial Day weekend. I call him Baltzy for short, for no real reason, and I was honored to be Dad's date for his scan-reading appointment.
First, you wait in the waiting room for a really, rheaally, rrrreeeaaaaallly long time. You contemplate what everyone elses' affliction is, you watch the end of Ellen, then head on in to Oprah, you wonder why they've juxtaposed such modern art and horrific waiting room art.

Dad was VERY VERY last that day. You know what they say. So we go in, and they take your latest concerns, then the MAN comes in.

Let me say, that I'm fairly confident with my google degree. So first we do the introductions, and Baltzy says that the spots in Dad's lungs are still stable. This is good news, and Dad and I high-fived.

Side note on spherical volume: The mets that they measure, we assume are globular, but also spehrical in nature. THEREFORE; we can compute their volume, which is fun.
So, the larger met, in comparison to its measurement in July of 09, is a mere 18% of its original size. Roughly the size of your pinky fingernail. I'm a fingernail biter, so mine is really really smal. The small met, which we were originally calling a slack-ass because it wasn't shrinking like it should, is a mere 42% of it's original size. Ain't math fun? As Baltzy told us in the beginning, stability is the mark of success. Now,back to my visit with said Oncologist.

We get the good news that he's stable, we high-five, then I go in for the kill. I ask if Dad can take a lower dose of Sutent. Acutally, let me set this up for you.

Me: What's the risk (on a scale of 1-10) to lower his doseage to see if that gives him any relief from the sore feet?

Him: YOU KNOW WHAT? I'VE GOT SOME OF THIS BLONDE THINKING TOO (I do have excellent hair color, the fine Dr's is more natch...), AND I'M SICK OF THIS SHIT! He finishes his sentence with his fingers almost around my neck.

Me (in my head): Geeeez, my degree's as good as yours pal!
Me (in real life): Geeeez! Ok? So a 10?

Him: We're riding on a miracle wave here, and any ground we might lose we will never get back. His feet won't hurt if he's dead, would you prefer that?

Me (in my head) : I can't believe he tried to choke me?!
Me (real life): Of course not. So what about his thyroid levels. Do we do synthroid? Isn't low thyroid a good indicator of Sutent effectiveness?

Him: You have done your homework, but you have more to do. There's one group that says to treat the thyroid level. There's another that agrees with low thyroid being a symptom of effective Sutent, and not to treat. We're going with them. No synthroid. He won't have any fatigue if he's dead. Would you rather that?

Me: Eye roll, Elvis lip curl, and head shake

Him: You are a refreshing combination of your mother and father.

Me: Toothy grin and a thumbs up (I'm rendered speechless at this point and I've forgotten all my other questions.)

Bottom line is that his lungs are stable, and he is to continue on 50mg Sutent. Dad and I discussed that all we have is our side to contemplate. Baltzy told us that someone died of RCC last week. He's got the other side to pull from, and keeps us grounded in the reality of what we're facing. We trust him, and he'll keep on taking the 50 mg.

I've moved on to a google radiology degree, so I can measure these mets myownself.

Back at the casa, the redneck pool has taken on an astronomical form. It has fountains, squirters, and now.... A HEATER. Yup. So Sam and Dad spent the better part of Saturday plumbing in the heater. They were only short one 45 degree angled PVC connector (impressive!). Once it was all connected and plumbed, and ready, it wouldn't turn on. Aaaaaaaaaawwwwwwwwww- it just wasn't plugged in. Ha!
So the propane heater raised up the water temperature from 62 to 76 in about 6 hours. Not bad. The grandbabies' lips didn't turn blue.

The grandkids had a fun time, Dad initiated a water gun fight, and it was kinda like being at the beach except for:
you have to climb a ladder to get to water
the dog was there
limited drive time

But it was really like the beach in that:
we played in the sun all day
bathing suits
sandwiches for lunch with wet hands
oreos
everybody there (except rach and matt)
that nice exhaused feeling you feel at 7 pm.

Here's Emily holding her own against all the boys.

All's stable,
E

Thanks alot, CANCER...

2010-05-20T17:44:00.000-07:00

I love to fill in all the little boxes of any health history, mail survey, application packet, etc...
I choose the right pen (depending on the paper type), I choose the right color (pediatric clinic or adult?) I have daydreams about the office personnel wishing everyone filled out their intake paperwork as well as I do.

So I'd like to say THANKS ALOT, CANCER! - now there's something more remarkable than my penmenship on my health history. Nobody's even going to notice how I line my xes up so they give a nice aesthetic line on the page. My next wonder is if said office personnel or said nurse practitioner will give me a sorry glance when they review my history, or will they want to scan my kidneys???

Whatever. I'm over it.
The best x on the page is right above the big number 2. I spent extra time on that one.

E

I'm fine, I'm fine, but my damned feet hurt!

2010-05-17T19:32:00.000-07:00

Ok, it's been almost a month again...I'll do better, I promise.

I talked to Mike Roller last night....he just turned 59! Welcome to the 98% of 60 club.
He said..."You need to blog. I check it all the time.I want to know what's going on with you. Curious people want to know." This picture is from his daughter's, Dr. Jennifer Roller, wedding on April 18. Mike was in a tux and looked good, but he missed the pic with Jerry Smith, Talmon Preyer and me. That's almost 180 years standing there folks!

Sooooo here goes. I'll try to be witty and interesting like Erin although I know I can't compete.

I do have CRS....Chemo Related Symptoms or Can't Remember S---, but I'll try to relate what I've been doing for the last month and how the chemo and related medical stuff is going.

The last weekend of April...Thursday thru Sunday... I took a road trip with three other guys from Second Pres. to a Men's Conference at MoRanch near Kerrville, Tx. I played with my chemo so that I would be on good feet for that weekend and it worked. It was about a 12-hour trip...we split it up on the way down...stayed overnight in Cleburne, TX in a brand new Hampton Inn. I think I was the first person that had ever slept in that room. It was kinda like moving into a new house. Frank Allison suggested that we take out time and not miss the opportunity to find a Dinasaur Park or IQ Zoo, but we opted for a beirgarden in Fredricksburg instead.
The conference was good...450+ Presbyterian men mostly from Texas, eating good food, talking to each other, singing some hymns and generally having a good time being prompted to think. I attended a seminar on Bucket Lists and decided that I don't have one and don't think I'll start one. It's sort of a romantic notion to do things that you always wanted to do, but I don't have a jet plane like Nicholsen and I sorta do what I want to do anyway.
The trip back was done in one sitting...four guys sharing the driving....hunting for ice cream all the way from south of Texarkana to Arkadelphia....who needs a bucket list!

Got back from Texas, started cycle 7 of the Sutent.... 6 days later I start the sore feet thing again. 8 days later I start my off week and on day 10 my feet are good again for 12 days. Who needs a calendar; just take some of this stuff and you'll pay attention to the days.

My friend Vic Sutcliff came up from Dallas on May 9th for a couple of days to help me clean out the garage. After the building project last year, I had accumulated a pretty good pile of good stuff. I was in good-feet mode for those two days but I don't have the "keep on plugging along"
stamina that I used to have. Who cares, I'm almost 60, and I can rest if I need to. Thanks to Vic, we got some heavy lifting done and some stuff hauled off and now that 3rd bay in the garage is only half full.

I also had Joe Amos from work come out with a backhoe and we started pushing down pine trees so we could have some more yard to mow and as a benefit have better views from atop our mountain. Joe cut and burned and pulled stumps for 9 days and we had a whole load of pine logs that we gave to a pulp wood hauler just to keep from having to burn them. I believe that Joe could plant tulip bulbs with that backhoe. He's the best I have ever seen on one.

Now it has poured down rain and we have mud but "the sun will come out...tomorrow......"

That brings us to Sunday the 16th. Emily's 4th birthday and, coincidentally, Mike's birthday. Don't you just love the circles of life. Who needs a bucket list....there is enough going on that we can just barely keep up anyway.

I'm in sore feet mode and I have an appointment with the oncologist tomorrow. I had bone scans done last week (moved up because of a shortage of radioactive isotope) I think the Iranians are hording it ! I actually made the geiger counter go off when I drove a load of scrap iron to the recycler. I suppose I was glowing in the dark that night, but it didn't keep me awake. I'll go in to the Doc on crutches whether I need them or not. I'll get no sympathy. Or, maybe my feet will be miraculously cured tonight...you just can't ever tell. Two more doses of cycle 7A and then yipppeeee I'm off for a week.

Writers block? I don't think so! Debbie says I'm scattered in my writing...and I don't write
linearally at all.... BUT I'M STILL VERTICAL.

I'll do better, I promise.
Bryan

Frequently Asked Questions

2010-04-21T19:17:00.000-07:00

Since the One Kidney Wonder (aka Purple Hull) often has writer's block, I'm going to nudge him along to get a new post up! We'll see how it works. As least it's different. If this flies, then maybe Rachel and I can get him to add FAQ to his Restoration Tile site!

Carrot: Everyone wants to know how you're doing. I guess they think you're not sharing your pain and suffering. Tell the one about needing crutches on Easter.

Purple Hull:

well, the most aggravating part is the damned sore feet. It seems to be very predictable now, starting the second week of taking Sutent. Sore feet lasts from 8 to 10 days followed by normal feet. Sore feet means that I can't just go do whatever I want. But the operative word is aggravating. I can actually put up with a lot even though I want to throw something and quit taking the chemo so I can just get back to normal (which is not possible). We were headed to Sam's house for Easter dinner and I couldn't walk . . . so Debbie went to Walgreens and came home with a pair of crutches. . . they work. . . and they did invoke sympathy. Within two days we had found the pair we already had in (you guessed it) my workroom :). We've been through Easter sore feet and 12 days of normal feet and now we're back to sore feet...never ending I guess. The rest of the side effects are tolerable. . . lots of people put up with a whole lot more. I can't complain.

Carrot: Do you have a bucket list? Do you want to go back to Europe? I know you'd fly on the Space Shuttle if they'd let you.

Purple Hull: I don't have a bucket list. I pretty much have done everything I wanted to do. The places I have been in Europe (industrial) are pretty much like going to Cleveland, only farther. We are of Western European stock so the faces look normal and the food is normal . . . I'd really like to go to Eastern Europe. . . .My understanding is that it is totally different. . . . and Cuba. . . there is a lot of tile in Cuba!!! Probably needs repair which makes the trip deductable.

The opportunity to fly on the shuttle is about kaput. I'd go in a minute if I could. Maybe I'll buy one at auction when the US Gov. sells our stuff to pay their bills. Then I could take it up myself. . . I wonder how much it costs to fill that thing up. My Am.Express card has no limit. . . or that's what they say. HEHE That"s the kind of thing you want to do for your last thing.

Carrot: Should we get more football tickets or just keep the ones we have? Maybe they'll all be together this season. Will Ryan Mallet's time off for surgery hurt or help the team?

Purple Hull: Surely 8 tickets is enough. We ate tickets last year a time or two.

Carrot: It will be a different vacation this year: Orlando instead of the beach. Which beach would you like to go to next? Hawaii? Antigua? St. Lucia? I need more samples of sand for my collection.

Purple Hull: I'm not sure how my mentioning going to see the shuttle launch became a bucket list item and therefore now we're off to Disney World....but hey if the grandkids want to go then I'm all for it. Hawaii holds no lure for me...except to see the volcanos. The carribean islands sound more fun, and I can get you some sand. Want some from the deposit in North Central Arkansas. How about from Edgar Florida...inland Northern Florida....cool huh? Is it the sand or the beach?

Carrot: Did you like having a real tree last Christmas? Is it okay to give the huge faux tree to Rachel and Matt who have really tall ceilings?

Purple Hull: Actually I prefer an artificial tree.... still not comfortable with a drying out tree in the house. I'd be delighted for Rach and Matt to take the 10 footer. The more of our old stuff you give away....the more we can stimulate the economy! You're such a good Democrat.

Carrot: How long will the sailboat that's never touched water stay in the front yard?

Purple Hull: Somebody had a SanJuan 21 in the paper last week...for more than I have invested in the yard art. Maybe I'll fix it up and make some $$$$. I do take care of my stuff. I'm not sure the SanJuan ever made it to my good stuff pile so if I put it in good shape then we'll keep it FOREVER.

(What? Chemo brain attack!)

Carrot: Are you up for a trip in the trailer? Where to?

Purple Hull: Yep...I like the trailer and I think the Excursion at 270,000 miles still has plenty of life left. It's at Erin and Shaun's place....we gotta get it back and then I'll put hardwood floors in and we'll take off for a week or so. It's not so much where we're going, it's just the going. Uh, we also should get a dish so we can go a little more rustic and don't have to be in RV parks with folks in blue jumpsuits and velcro close shoes.

(I do love electricity.)

Carrot: Yes, I agree, my brain is a little scattered. Every thought leads to lots more. I still like my idea of going fishing without hooks. Always yours.

Purple Hull: You really think I have writers block?

She's so much more than just tolerable

2010-04-05T16:47:00.000-07:00

You see....I was a little self-deprecating, but not towards myself, in my comments of Dad's last post. I said that mom was so much more tolerable on the beach... insinuating that she is intolerable when not atop sand. I owe her an apology. As she is, much more than tolerable. Her comment of my comment did not show the depths of my hurtful comments, as when I talked to her just today, and I tried to weasel out of my comment saying that "i was just self-depriciating... just to you instead of me" she said that was the very definition of mean. And it is. And I'm sorry.
SO.... how do you un-offend your mother? There are yo-mama jokes... which are always funny. YO MAMA SOOOOO FAT (and tolerable), SHE WORE A MALCOLM X SHIRT AND A HELICOPTER LANDED ON HER. Good one. Good one. YO MAMA SOOOO FAT (and tolerable!)... SHE SAT ON A DOLLAR AND CHANGE CAME OUT! Ah ha ha ha. Ok. I'm done. Wait wiat. Sisterbaby did some googling for me... YO MAMA SOOOO SKINNY(and tolerable)SHE HOOLAHOOPS IN A CHEERIO! Ah ha ha ha haha.

So... here's how tolerable my mother is:
She loves my babies as much as I do. She said one time that I'm the most motivated person she knows. She doesn't give me compliments if I don't deserve them; therefore, when she tells me I look good, I really look good. She buys all the Christmas and Birthday presents. We know. She invented Halfy Birthdays, Crazy Suppers, and the Proud of You Song. She didn't buy into me needing hi-top Reeboks in the 4th grade, and I'm apparently better for it. She feeds Dad. She says that if people know you're wearing make-up, then you've got on too much. She told us our whole life that it wasn't about us. Everybody's too worried about themselves to be worried about what you look like. However, when I put my wedding dress on, she was quick to say "Oh,honey, today... It's all about you." She's on my favorites list in my iphone. When something good happens she's on the top three list. When something bad happens, she's on the top three list. She worries about us all the time. But, when she steps into the sand, on any gulf, her worries slip away for a sec, and she runs around with her enviously bird-like legs, pecking around, letting her toes get in the surf, and she doesn't worry. We love seeing her love the beach is what my comment should have said. But it didn't. And now, according to her teachings, I must apologize until I'm asked to stop.
I'm sorry.I'm sorry. I'm sorry. I'm sorry. I'm sorry. I'm sorry. I'm real sorry. Sorry mom. I'm still sorry. Real sorry mom. Sorry I hurt your feelings. I shouldn't have said that mom. That would have hurt my feelings too. Sorry mom. Love you mom. Why do you even tolerate me? Sorry. Sorry mom. Hey mama, I'm sorry.
Sorry. Will a glass of wine fix this? Do you feel better yet? I don't. Sorry mom. I'm real sorry. I'm a shit head. Sorry mama. I won't do that again. It's not nice to not-yourself-depreciate. Sorry. Oh! I'm so sorry! I'm sorry. Sorry mom. I don't want this to start sounding sarcastic, but I really am sorry.

Please accept my public-esque apology.
Erin Amanda

Gosh...Has it been a month?

2010-03-27T18:11:00.000-07:00

Hi friends,

It's been a whole month since I reported in. There is a lot of same ol', same ol' , but we've had a busy month and seem to be doing pretty well.

Three weeks ago I had the worst set of sore feet I've ever had. It lasted a complete 12 days. I could still get around, but I think that I was compensating in the way I walked and somehow got a sore hip and thigh. Feels like a pinched nerve to me. Doc wasn't particularly worried about it...I suppose he's seen worse... nurses asked if it was discolored and sore to the touch...when I said no, they said ok. The sore feet went away when I got to my off-Sutent week. The internet theory on the sore feet side effect is that the small capillaries in your extremities can rupture and some of the Sutent seeps out into the muscle. I didn't miss any work (probably should have) but I spent lots of time sitting down.

Doc, the wizard of the hemotology and oncology, decided that I was anemic about two weeks ago (another one of those side effects) and since he wants all of my systems strong so he can keep kicking the hell out of the mets at full dosage, he prescribed a couple of units of blood. So last Friday, a week ago, I went to St. Vincent's and spent about 8 hours getting a transfusion. On TV they install blood at a much faster rate than real transfusions. Turns out it only costs about $500 per hour. Rumors are that you get instant perk, I musta missed that part, but I do think that I have more energy. We'll check blood again next Thursday.

Spring break was last week. Debbie has a side effect from teaching school.....when it's spring break, she has the strong urge to feel sand under her feet. So, we took a few days to go to Pensacola. I wish we could get Al Gore fired up about global warming again because it was cold

at the gulf coast. I have thin blood anyway and it doesn't seem right to be coated up in a beach chair. Sunscreen is about 3o SPF and I guess we had on our SPF 200+ polartec and gortex.

You'll be happy to know that I have had no loss of appetite. I've given up pie, but I seem to find other things to stay well fed. I did get some new sunglasses....cool dude huh!

We're hanging in. I'm in my 32nd week of Sutent. It's sorta becoming a way of life and I'm not worried about where we're headed. It's not at all bad, just aggravating at times. Thank goodness for good insurance and good friends and family. I still respect this disease and know that it's not always black and white on whether we're gaining or slipping. I think I'll go back to just being Bryan....it's who I am anyway.

Y'all hang in there too.

Bryan

Second set of Scans

2010-02-25T19:00:00.000-08:00

Hi All,

Today was scan day. This was the second set after beginning Sutent. Wow, it has been 27 weeks. Being the recipient of this doctoring stuff takes all day. You gotta retire to have time for it. I guess that I'm practicing retirement early. It seems like a long time between postings. I suppose that means that The Rotten Kidney is part of my normal routine now....you just roll with the punches.

I got up this morning, scheduled for blood work at 9:45, Injection for the bone scan at 10:00, CT scan at 10:00, wait a couple of hours, then bone scan at 12:45pm. Meet with Dr. Baltz at 1:00 pm for results. I asked about the quick turnaround between bone scan and meeting with Dr. Baltz, and the scheduler said...you know he's gonna be behind but it will keep you in the que. I could have gone to the plant for the wait time, but I'm weaning myself from that...so I went to get a haircut.....that explains the attached picture. graystinguished huh !

Everything went per schedule until after the bone scan. True to form, we finally saw Dr. Baltz about 3:00.

He came in with two thumbs up ! He didn't say miraculuous this time, but he is very encouraged and encouraging. He said "I've been doing this for 20 years, and at the moment I have about a dozen folks just like you that are doing very well." These drugs were not available until recently and he's making the best of them.

Results: bone scan is clear, brain scan is clear, abdoman is clear, lung mets are stable. Stable means they are not growing. He reminded us that we had tremendous reduction in the size of the lung mets in the first 3 months. He said he still wouldn't recommend biopsy of the mets and that either they were slowing down in response, or they may have shrunk all they could. I kinda like the sound of that. So we will continue on with the Sutent and scan again in 3 months.

I'll have the complete radiologists report tomorrow.

I was hoping for an all clear....darn.... because the most aggrevating thing is sore feet for about 3 or 4 days out of 21. It's not just kinda sore feet...it's " I can't walk on these " sore feet.

To me, chemo conjurs up images of burning veins at the time of treatment and then throwing up and feeling like hell for several days, then having to do it all over again....I think I can put up with some sore feet for a few days at a time. With the specter of "OOOOOO sore feet " I'll have to plan when I go play golf or something else..... tough huh? I think that I have it easy by comparison...so maybe that's why the doctors and nurses just kinda nod when I start talking about my SIDE EFFECTS. I'm a lucky man.

So there you have it.

We're doing well.... Life is good.

Situation Normal

2010-01-29T12:36:00.000-08:00

If anyone is worried that Bryan is not essentially the same man as Before the Rotten Kidney, please observe. He did stay home today as sleet pelted the roof. It's a snow day for school kids and teachers (hallelujah). He even slept until 10:00. That IS a change.

By 11:00 he was in full have-to-get-in-the-truck mode. It seems that the diet Coke supply had slipped under the restock-now number. As an earnest believer in meteorologists' forecasts, I knew that we were just in a short dry time before the sleet returned. I warned him. I told him he shouldn't go. Then I told him to take a walking stick to help him back up the hill. Ignored.

It took the diesel engine a good 15 minutes to warm up and the windshieldto clear; then he was off. In no time, the sleet was back. I texted him to hurry. He said he was checking out. About that time the neighbors drove up looking for their dog. The driveway was slushy but passable. Within 15 minutes, their tire ruts were covered.

Next call: The truck didn't make it up the big hill. He drove around to the road behind the house and walked the rest of the way with the whole 24-pack of diet Coke plus another bag of "essentials." He considered all of this as a perfectly reasonable action. I still think it was crazy. Now we're watching golf. He has a diet Coke, of course.

Same ol' dull medical news !!!!

2010-01-27T21:06:00.000-08:00

I suppose the contents of the title is a good thing.

I haven't written in a while....and I keep meaning to....but hey, I'm busy.

This must the the dull part of medical treatment. I'm feeling good 95% of the time, and the feeling bad times aren't dreadfully bad. Mainly the feeling bad times are being tired one day, or maybe the obnoxious side effect of tender feet. A couple of days of tender feet isn't terrible, it's just aggravating.

I have a new side effect. My hair is now pretty gray/white and for some reason has turned soft. We had a warm day in mid January, and I put the top down on the t-bird, just because I can. It was actually blowing my hair around. I now have to deal with bed-head and other aggravating things that haven't been present here-to-fore.

The eyebrows are now all white....and I get comments on them!!!! So far it has only been from guys at the gym. What's up with that?

I've posted some pics of bed-head and my new fluffy hair and my new short haircut from today. The white grows from the inside...so I guess I have white ROOTS. When I get a haircut it progressively gets whiter and whiter. A small price to pay.

Medically, my blood work is still all good or explainable. I saw the nephrologist ( the protector of the remaining kidney ) this week. He changed my b/p meds a little. Increased b/p is a side effect of the Sutent and not particularly good for the remaining kidney. He concurred with the Cancer Warrior that all the rest of the blood work looks good. I see the oncologist (Cancer Warrior) next Monday. We're on a three week rotation with him now. I'm in my 23rd week of Sutent.....Thank goodness for Insurance. I'm real interested in the pre-existing conditions portion of health care. My USNews came this week and the cover story is "How to live to 100".

That should be interesting!

So, now we just keep taking the meds and keep living life. We're scheduled for another complete set of scans at the end of February. Then we'll know how we've been doing.

Today is Elliot's 1st birthday. We were there in spirit. We ate dinner with Eli and Emily and Sam and Alicia tonight. So we sang happy birthday to Elliot in absentia and helped him blow out the flashlight we were using for a candle.

Life is indeed good!

Bryan

The OKW turnes 59

2010-01-10T19:09:00.000-08:00

Well, the One Kidney Wonder turned 59 last Wednesday. We had the big family celebration this weekend so everyone from the frozen tundra of North West Arkansas could attend. A good time was had by all (best I can tell anyway). I'd add more commentary but I'm out of witty commentary for the day. So, here's some pictures instead, in no particular order. So now we've only got 360 or so days until the big 60. Guess we should start planning soon.

Sam

Eli and Ethan were competing for Paw-Paw's attention while working on their Lego sets.

Elliot was mystified at how this whole unwrapping thing works.

Nana got Paw-Paw a 10-in-one game set. Here he is sniffing the wood.

Elliot kept trying to get Eli's attention.

Thankfully Ethan was willing to help unwrap Elliot's gifts.

The grandkids love all of the Paw-Paw time that they can get. Mine get a disproportionate amount of time since we're just "around the corner" compared to the other 2.

Goodbye 2009

2009-12-31T20:00:00.000-08:00

January: Elliot Martin Oliver arrived during the ice storm of the century in Fayetteville. By some fluke of engineering, our hotel had power, so we took Ethan back with us. He's convinced to this day that we lost his LSU football uniform pants there. So, Nana replaced them. Now Erin has TWO LSU helmets to store. Surely, Elliot will have a phase when he will wear one to humor his Daddy.

February: We continued our house remodeling project. Painting morphed into new window and door trim and starting the screened porch addition. I loved waking up to see a yard full of pickup trucks. All I had to do was make a request and these guys said, "Yes, ma'am."

March: Bryan first noticed the swelling in his parts. We spent Spring Break in Fayetteville, helping with bridal pictures and grandbabies. Erin and I took Elliot along to the photo shoot with Rachel. He was a trooper. The photo shoot had been delayed because of weather, so when we got to Fort Smith to meet the photographer, there was no place to change into her gown. Shannon marched across the street to the funeral home, asked if we could use a room, and led us in! Erin and I were panicked that mourners would encounter the beautiful bride in the hallway, but there was no confrontation.

April: The house project continued quickly. After 27 years of glacial-speed progress, having all these workers here was quite a change for us. We had carpenters, granite fabricators, tile layers (thanks, Keith!), roofers, electricians. . . . and we had a wedding about to happen!

May: The weather threatened, and we rented every tent in Fayetteville, but the wedding was beautiful! Wearing blue rainboots, Rachel avoided the puddles, and the ceremony happened as planned in the Botanical Gardens of the Ozarks. The nephews and niece made it down the aisle and the bridesmaids avoided hypothermia with their lovely pashminas. Then we had a great party. Congratulations, Mr. and Mrs. Silvestri! We celebrated Emily's third birthday. She loves Fancy Nancy books, Legos, and baby dolls. As much as she loves to read, she loves to talk.

June: Bryan and I went to Malibu to visit with Bob Harris of Malibu Ceramics. He and Bryan collaborate on a lot of projects since their talents complement each other. We stayed in a beautiful house on a mountain overlooking the ocean. It was then that we realized that a visit to the urologist was necessary to figure out what was going on.

July: We had a houseful. The Sutcliffes were here. All the kids were here. Peggy was here. Daddy was here. Others were waiting at home to hear. After the diagnosis of stage-four renal cell carcinoma, the brain scan was next. We held our collective breath and together sighed our prayers of thanks when it showed no mets. "We knew there wasn't anything in your brain!" Then waiting for surgery was hard. Knowing that a cancer is growing inside you is frightening; to have to wait so long to get it out gave us a sense of helplessness. However, we had met the surgical doctors on the team and were confident in their plans. July 22: radical nephrectomy followed by several days in the hospital. What a supportive, competent group of nurses and doctors we had at St. Vincent's. They took care of us and smiled at our beach-themed visitors. We met our oncologist, Dr. Baltz, and immediately felt safe and optimistic in his care.

August: We actually went to the beach. Dr. Baltz understood our family's crazy need to complete our annual trek. He approved the delay in Bryan's blood tests by prescribing daily heparin injections. The grandkids understood their parents' explicit instructions to NOT use Pawpaw as a trampoline. I even got a new car for the safe transport of the patient. I had expected to need to drug him up for the trip, but he did fine, even walking into rest stops and restaurants. The beach house had two living areas. In past years, we have made ourselves available to the kids, focusing on each one in turn. This time, Bryan napped and I found quiet places to reflect and rest. Just being together was healing. Elliot contracted foot and mouth syndrome (disease?) and was a mess. His mouth hurt so nothing was soothing. Bless his heart. He was better by the time they flew back to NWA. The other kids loved the pool and the sand. They love to be together.

September: Back to school and the self-centered world of middle school kids. All my colleagues have been tremendously supportive and helpful. Teaching is a monumental task. There's not really a break from it. No substitute takes over the tasks. The planning, responsibility for instruction, assessment, interaction with parents, care of students doesn't abate whether the teacher is on deck or not. It's a heavy load to carry along with a heavy personal load. I know many teachers carry that load, and I hope to understand it in others and help when I can. I try not to whine.

October: We love those Hogs! We were able to attend all the football games both here and in Fayetteville. Rachel and Matt organized great tailgating in The Gardens. We usually rode the shuttle bus up the hill. One of Bryan's side effects has been tender feet. We even went to Dallas to the new Cowboy Stadium to see the Hogs play Texas A&M. David Sutcliffe and his wife, Jenn, are A&M alums, so it was fun to visit with them and their baby, Anthony, before the game. Rachel and Matt met us and took us to the game. David's folks, Gail and Vic, retrieved us from the game so we didn't have to negotiate Dallas traffic.

November: Thanksgiving is usually at our house. We love it. Cheryl Dawn, Peggy, and I usually make dressing by the vat. Tables everywhere. Enough food to make us all feel stuffed, drowsy, and very grateful. But, this year, Sam and Alicia were going to KC, Erin and Shaun were going to Shreveport, and Rachel and Matt were packing in preparation to moving. We had many invitations from all of our friends. We decided to go to the Henry house where we had a wonderful meal, a soft couch for watching football, and a very-welcomed respite from our busy lives. I actually made a normal -sized dish of dressing that was pretty good. We were disappointed that LSU beat the Hogs in overtime the next day. Ethan had to be convinced that his team really lost. He was in Tiger country and was influenced to defect. The best news came on the 30th, though, when Bryan had his latest set of scans. Whole body, top to bottom (thanks NovaSys) NO NEW METS!! and the mets in his lungs are shrinking! Bryan used his famous math skills to calculate the volume of the largest based on the numbers from his previous scans to figure a 79% reduction in size. Dr. Baltz told us that it was nothing short of a miracle. Keep those prayers coming folks!

December: Birthdays! Eli turned seven on the 2nd. He chose El Porton for the birthday dinner. When he was two, he loved that place. He called it "Tone" and would eat cheese dip with a spoon. He is much more refined now. His friends' party was a Lego party at his house. Alicia made a great cake that looked like Legos, of course. He's enjoying first grade at Williams Magnet School and is a Tiger Cub. His Daddy is, of course, the den leader. Ethan turned four on the 8th. He had a friends' party at "Chucka" Cheese that we missed. It was on a Tuesday! Ethan is now on the Mighty Mites' hockey team and actually ice skates. Matt's birthday was the next day. We made it to Fayetteville over the weekend to see their new house. We have guest quarters! We realized that the perfect gift for him was a sky hook, but since those don't exist, we found a great ladder that is alternately an extension ladder or a step ladder. The smoke detector in their living room is at 20 feet! We continued through the fullness of Advent, getting busier and busier. Gertie came down for a short visit. We appreciate the folks who carry her down. She needs to see her boy regularly. This isn't something a mama should have to endure. On Christmas Eve, Sam and family, got out to the house around 3:00. Daddy was already here. We had planned to be here with them until Christmas afternoon and then head up to NWA to see the other kids. The weather was coming at us, though! Sam and Alicia and kids were heading to Germany on the 26th, and they didn't want us to get stuck here, so they said Go Now to beat the snow. We quickly threw clothes, gifts, food, etc. into the truck and took off around 5:00. The precipitation was liquid until we got onto I-540 when it turned into blowing snow. It did get slick, but we made it to the Silvestri abode by 9:00. They welcomed all of us, even sleeping on their couch so we older folks all had beds. Cheryl Dawn and Marty made it down from Bella Vista to get Papa the next day. We had our usual rollicking Christmas dinner complete with crackers (silly hats, jokes, and toys) and a delicious dinner. Ethan is into Jesus and the wonders of his birth and reality. We elders are kept on our toes, answering all his questions.

We celebrated our 37th wedding anniversary yesterday with dinner and a basketball game. Tonight, we've watched more football and other New Year's Eve television. How blessed we are to be here, together. Life is about as normal as we could ask. We look forward to 2010 with optimism and hope. We continue to plan new projects and new trips. As we said when this diagnosis was presented to us: What do you do when told you have cancer? You live!

Christmas Season '09

2009-12-25T20:21:00.000-08:00

Well, it's been awhile. Things are still dull and going well.
What a year it has been. (or at least half a year) .
I just started round 4 of the Sutent, so we've completed 18 weeks so far, and 5 months since surgery.
Had a doctors appointment today. This was a normal appointment with bloodwork and some face to face time with the Cancer Warrior. Blood work was normal or ok for the situation except
that the blood is super thin at the moment. He adjusted the coumadin for a couple of days to
get it back where he wants it. We'll check it again in a week. I don't feel bad. I couldn't tell that something was out of adjustment.

We had Christmas all over the place this year. Years ago, we were determined that our kids would wake up in their own beds on Christmas morning. Well, dang !!! They were paying attention and now they want the same thing for their kids...and so we travel. We had a shortened Christmas eve time with Sam, Alicia, Eli and Emily. Our plan was to also be with them on Christmas morning, but at their urging because of the eminent snowstorm, we went on to Fayetteville on Christmas eve night. Stayed with Rachel and Matt (they don't have any little ones yet, Rigby the puppy doesn't count).

Carrot's Version:
Dull? What does chemo do to your perspective?

After receiving the news that OKW's scans were "nothing short of a miracle," we settled into celebrating Advent and Christmas. We got a real tree instead of going through the intense work of putting up the nine-foot artificial tree. We met Eli and Emily at the tree farm to choose and cut our tree. They had already chosen, cut, and loaded theirs by the time we got there.
I took off the last day of school before the holiday to avoid the three-hour holiday talent show and movie for 300 sixth graders. I had a wonderfully calm, quiet day to begin my vacation. Of course, I have 200 essays to grade before I go back, but that's the price of that quiet day.

Daddy came to our house on Wednesday for the duration. On Christmas Eve we had all eyes on the weather. With the snow storm looming, Sam and Alicia encouraged us to get ourselves in the car to get to Fayetteville before the road got slick. So, in an hour, we tossed gifts, clothes, food, Daddy, and ourselves into the truck and headed north. The snow hit soon after we got onto 540 and made that leg of the trip really exciting. We arrived at Rachel and Matt's house safely but unwilling to go any farther to find more beds. Rachel and Matt ended up giving us their bed and sleeping on the couch. On Christmas morning Cheryl Dawn and Marty made it down to retrieve Daddy and headed back to Bella Vista. We had a wonderful dinner of veal and crab-macaroni and cheese and enjoyed our silly crackers with hats, jokes, and toys. Sam's family negotiated the airlines successfully after a nearly three-hour sit on the tarmac in Atlanta. They're in Germany now with Alicia's folks touring the snowy old world.

I helped Rachel unload the boxes in her office. Matt painted stuff using his new 22-foot ladder. Who puts a smoke detector that high? This morning I rode back to Little Rock with Erin and her boys. Ethan sang every word to "Do You Hear What I Hear?" over and over. Elliot is perfecting the back-arching screech to protest any denial of his mobility. PawPaw is installing a gate on the stairs as we speak.
On Wednesday, we'll celebrate 37 years of wedded bliss. What a journey. From U of A students in 1972 to the joys of grandparenthood today, it's been a blessing to be best friends and in love.
On January 6, Bryan will turn 59. We hope his 60th year is as exciting as this one. Dull? I don't think so.

Erin's perspective:
Blah blah blah blah blah blah blah blah. I sat in that oncologist's office today... it was ridiculous. I was looking to meet the Mysterious Dr. Baltz, but I didn't have the chance. Seriously folks... a line as long as St. Peter's, waiting for your name to be called. This guy must be good.
I had dinner and drinks with my dearest friend Amy this evening. She was worried about Dad. I told her (and she is well versed in seeing thru any facades or shenanigans I may pull) that he was fine. He has white eyebrows, but he's working full days, and doing his thing, and that for right now, he was just fine. She bought it , so I will too. Her major concern was that Mom had not booked the beach house for next summer. She knows us, and knows that booking the beach house is as regular as fixin' breakfast, so... her conclusion was natural. I assured her that with our latest results from scans, we were in talks of beach vacations.
There was actually a minor sibling scuffle over the parents this year for christmas. Rachy and I wanted them in Fayetteville, Sam wanted them in Little Rock. I'm sure they felt wanted and important, and I'm sure they secretly loved it. I just wanted them to open their new jerseys for next years' games in my presence.

Oh Yes! The perfect present!
Ummmmmm, don't know what else to say. Blogging is stressful. I didn't like sitting around that Oncologist's office today with lots of people that looked sick. Dad doesn't look sick. He looks ridiculous with his white eyebrows, but most people would assume he had an unfortunate pigmentation condition, not the dreaded Big C.
Next, the Birthday Party. We've always shafted Dad's B-day simply for its unfortunate juxtoposition to Jesus' birthday. Too bad for him. This year, it's on.
Come one, come all, we'll have pie.
Lervy Dervy, E

2009-12-14T19:15:00.000-08:00

Hellew there. Life has gotten busy, and I've neglected my LittleRottenBlog. Just talked to mom. She said that in their appointment with Dr. Baltz today he wheeled his little rolley stool over and said "about these scans..." Mom was ready to throw up expecting the worst, Dad was probably ready to show his spherical volume math skills, and then he said "they are nothing short of a miracle."

What a nice thing to hear at your oncologist's office! That's all the technical news I know of.

Moo and Poo came to Fayetteville and stayed with Matt and Rach. They just bought themselves a palatial mansion for the two of them and Big Rig, The Hairy Little Dog. They'll make some babies one day and fill it up... but until then... there are some apparently comfortable guest accomodations. Word on the street is that Dad slept until 10! Whaaaaaaaat?? Yeah, 10.

Here's PawPaw and Elliot. I like this picture because their eyes look the same I'll line us all up at Christmas and show the magic of genetics. How can three people have the same lookin' eyeballs?

Christmas is approaching. Lets think about this. On July 5th, I read somewhere that the average survival rate of Stage 4 RCC was 5 months. So instantly I thought, Oh, December 5th, ok, Christmas is going to be weird this year.
But its not! I still don't know what the HEYUL to get Dad, as he is THE HARDEST person to shop for... I am hosting Christmas dinner, and I thought about putting some sappy place card at Dad's spot telling him that I'm glad he is here, but then if I saw him read it, then I'd start crying, and then he'd see me crying and he'd start crying, then Rach would start in, and them Mom would catch on a little late, but she'd join in, and then Shaun and Matt would just stare at us and wonder what they've married into.... so I'm not gonna do it. Too risky.

Glad you're here, Dad. I'm not going to write it down. Maybe I am and I'm just prepping you?

Christmas approaching. Today my Ethan asked me if God was real, if Jesus was real, if we could drive to Heaven and take Jesus a present, that I told him that Jesus lived with God in Heaven and his Daddy told him that Jesus lived in his heart, so how could he be both places?, if God can fly, if God was a baby once, how long ago Jesus was a baby, if it would take a long time to get to Heaven to drop off the present and would he get to watch a movie in the car, and how did God make the Earth. He wouldn't get out of the car before I answered the last one. I felt like putting on my best Charlton Heston voice and starting in on the "ON THE FIRST DAY, GOD CREATED...." but we were late. I haven't had to answer any questions about the Holy Ghost yet. OYVEY!

So, what will I get Dad for Christmas? I actually have THE PERFECT gift. I think. It was all Shaun's idea, and I'll give him full credit.

Dad gave us the Bob Dylan sings Christmas CD. So, get your Bob Dylan voice in your head .... and

Fawl.... on ya knees..... and hear..... the angel voices....

Glad you're here Dad. EAT IT, STATISTICAL DATA!

Erv

Shar-pei Syndrome

2009-12-02T18:31:00.000-08:00

Hi all,

You know that Chinese dog the Shar-pei; a bundle of wrinkles with a sweet dog inside.

That's how I looked this morning. I'm in an off week and for some reason retain water.

I had so much water this morning that my eyelids were bulging and partially blocking my view of the world. This is how I felt this morning.

The Shar-pei was the first thing I though of. Maybe I'll soon join old Asian royalty.

Tonight I'm back to about a normal 58 year old face....I'll take it.

We got the scan data today. Incredible !

The largest nodule in my lungs has decreased from 2.3X2.1 cm. to 1.3X1.3 cm. If I assume that the thing is somewhat spherical, then the volume has gone from 5.54 cubic centimeters to 1.47 cubic centimeters. Folks, thats a decrease of almost 75%. The other three had decreased slightly or were deemed stable. This Sutent is working.

The brain scan only had one notation....unremarkable. Hmmm how can that be? I can calculate the volume of a sphere; that's remarkable in and of itself. I am happy to have an unremarkable brain scan.

The other CT scans of the abdomen and pelvis also showed nothing that would be considered to

be mets. Essentially no change from the August 27 scan. And they did note that the right kidney was gone, gone, gone.

I was also injected with radioactive stuff and then given a bone scan from skull to ankles. There was nothing noted except that maybe my right knee was wearing out before my left knee.

I feel extremely relieved. You never know if the right drug has been prescribed. Apparently we started with the right one. Dr. Baltz is still my hero. He's quite a warrior. He did appoint Debbie to be the "boss". So she must be doing a good job too. We've made it this far. Although

I don't stress much, there is notable relief in the air the last couple of days.

Eli turned 7 today. I had lunch with him at school then we went with Sam and Alicia to Eli's choice for dinner at El Porton. Cheese dip and tacos YUMMY! Then we went to their house for birthday cake. Alicia and Emily made a "robot" cake. We've had a good day.

This weekend we're going to Fayetteville to stay all night in Rachel and Matt's new house. You know of course OKW can't move furniture hehe.

Erin, Shaun, Ethan and Elliot were here right before Thanksgiving; passing through on their way to Shreveport. Ethan's birthday is Tuesday the 8th at Chucky Cheese. We'll miss that but will celebrate early with him this weekend.

Carry on y'all

Great Speckled Byrd

Lookin Old, Feelin OK

2009-11-15T19:12:00.000-08:00

I had an Oncologist appointment on Friday afternoon. Blood work still improving and blood pressure improving with medication. Thank goodness the blood work is still ok...therefore the food possibilities are still wide open. Or so I thought !!

After that comment last time about the width and breadth of my integumentary system (skin area) it is noted that weight is increasing. Doc said, "What's with the weight?" There seems to be a steady increase going on there too. He said something about, ". . . all gut, no butt." Soooooo , get some of it off. Get under 199.

By my interpolation of the skin-area data, that should be about 2.08 square meters. I didn't give the excuse that during my off Sutent week I retain fluid....so maybe I have an ace up my sleeve. The next appointment will be at the end of two on Sutent weeks. I think I'll make the weigh-in, but to make sure I'll step up the exercise and drop the pie and bread.

The eyebrows are white as are the lashes. I included a picture here. Geeeze I look old, but since being old is the goal of all this, I might as well look the part. Maybe the exercise and the vacation from pie will take care of those jowels.

We finished the out-of-town football game schedule this weekend. We do enjoy it, and especially seeing those out-of-town grandbabies makes it special, but I'm looking forward to being home for a while. I'm feeling good, not particularly bothered by any side effects at the moment.

I'm working every day which is mainly talking to customers and scheduling the factory. I hope this week to secure a building permit for the expansion of the factory. I want to pour concrete by early December at the latest. The building is already on order and will be delivered by about the 10th.

We're hanging in ! Life is good ! I feel the strengh of your thoughts.

Great Speckled Byrd

The Fast Lane

2009-11-07T17:24:00.000-08:00

We don't seem to be slowing down any. I took a couple of personal days on Thursday and Friday. It was nice to be able to take care of errands in a more relaxed time frame. Thursday afternoon Bryan went to get Eli; they had a Home Depot date. They've been designing and planning an addition to our new deck that would include a slide, swings, etc. Eli also says that we need to find four trees around which they'll build a tree house. He's very adamant about the number. Bryan suggested that one tree might be enough support along with other lumber. No. Four trees. His other plan is to have a hinged ladder so he can raise it up into the tree house, preventing someone (little sister? little boy cousins? Nana?) from entering his space.

So, they drove up in the truck with the back open because the big box containing the Tunnel Twister slide was so huge. It took the whole afternoon to remove part of the deck rail, frame in the slide barrier, and begin to put the slide pieces together. Eli's job was to hand me sets of one bolt, two washers, and one loc nut for each of the fourteen connection points. Sorry, no pictures of that engineering feat. While we waited for Pawpaw's construction part to be done, Eli and I swept a mountain of leaves off of the deck. Kid power is amazing. We were almost late for dinner back at their house. Emily was holding court with Mary Helen and Joe, showing off her new room. She was ready to have Mary Helen start reading stacks of books.

Friday we went to Fayetteville just in time for Bryan to change clothes and head to a meeting at the Fay Jones School of Architecture. I stayed at Erin's house and played with Ethan and Elliott while she finished packing for their weekend trip to Branson. Ethan has transferred his focus from football uniforms to superheroes. He greeted us in a Batman costume and changed into several others within an hour. Rachel made a cool birthday party invitation for him that superimposed his face onto a Spiderman body. He thinks he gets Spiderman boots and gloves now. Where on earth can I find those?

My favorite sister in the whole world (Cheryl Dawn) came by for a visit. She lives up in Bella Vista. We always have trouble getting all of our catching up done with each other. We talk about Daddy a lot. We enjoy watching him enjoying life but worry too. Mama left us with that worry gene.

Friday night we had a lovely dinner with the Dean's Circle group (folks who support the Architecture School). Leslie Belden is the minister who married Rachel and Matt. She's also an architect. Her husband, Ted, and she are active in this group. Steve Kinsler is the chair of the group. He was a Scouter when Sam was in high school. Arkansas really is a small state.

Today we had fun at the game then drove home so we can have a day of recuperation from all of our fun before the new week begins. We joined the line of cars going back over the mountain. There were two choices--the slower lane was going about 60 mph and the fast lane was pushing 80 mph. Which do you think we chose?

Bryan's lifelong friend, Mike Roller, and his wife, Dianna, are coming to see us Monday and Tuesday. Their beautiful daughter has taken a week off from her medical residency in Rhode Island to come home and to make the Arkansas Bride's Pilgrimage to Lowe's Bridal Emporium in Brinkley. I've given them enough information to give them guidance without scaring them to death about weddings (I hope). My best advice is to hire Jessica the Wedding Planner. She saved us much more money than she charged, plus she took care of everything!

Today began the off-week ending his second round of Sutent. The current side effect is sore feet. He says they feel like blisters that have popped, grown new skin, and are being abraded by his socks and shoes. For that reason, we used the handicapped parking lot and rode the shuttle to and from the stadium today. I insisted. Foresight is not his forte. He told me later that I was right, of course. New scans will be scheduled for the end of November. We pray that this drug is doing its thing on his lung mets.

Between Razorback games and grandchildren's events, Bryan continues to go to work, keep his customers happy, and supervise the work on our house. While I was driving to Fayetteville, he was on the phone, arranging for gravel to be delivered and spread on our driveway. I'm tired just recapping all of our activities! I need a trip to the beach.

I Had a Loaded Baked Potato and a Diet Coke for Supper

2009-11-02T18:32:00.000-08:00

My oh My ... we had a busy week

We had dinner with Eli and Emily on Wednesday.

Emily is a squeeler...especially when PawPaw walks into the room. At dinner she wanted to

know why PawPaw had a sick kidney. Those little ears hear it all and they deserve explanations. They learn from us constantly.

Eli is quite a writer. He has made a big list of things to get from HomeDepot. He and I will go next week and get materials and start construction of the best ever swingset/monkey bars/ playground. Photograph attached.

Another Razorback weekend in Fayetteville. Homecoming is fun, but the game was too easy. We actually left in the 4th quarter (unheard of) when we were ahead by about 50 points. I'm always amazed at how tired going to a ball game makes me. Ethan reminded me Sunday morning when he asked me to play football with him. A couple of throws, catches and soft tackles and I was ready to ride the bench for awhile. Moonpie ( Elliot ) can say DaDa and I was encouraging PawPaw but didn't get very far. He's pulling up and looks poised to take off soon.

Then we went to Mtn. Home on Sunday afternoon for the visitation and memorial service for Don Bell's mother. Although those are sad occasions that we all must attend to, they are also joyous and grounding occasions when we reconnect with our friends and families. It was great to sit with a pew full of friends who go back five plus decades. We weren't there to see each other; we were there to hold up Don and his sister Patty. It was a very nice service. The women in Mrs. Bell's Faith Group each spoke about her memories of Winifred and read favorite bible verses.

Y'all have heard all the moaning about what I was going to have to eat and live on forever and ever. Well.....you have to go way back for all of the connections in this story, but this is how things work in Arkansas. My next door neighbor growing up, Laurie Ahrens Townsend, about 5 months my senior, started first grade a year ahead of me because I was a January baby and missed the cut-off, so we were separated all the way through school, then she went off to college and became a dietitian, practiced 27 years in New England, retired and then moved back home about 5 years ago. Laurie was in a Bible study class with a classmate of mine, Julie Gustafson Williamson. Julie told Laurie about the blog and the hell-of-a-diet we were looking at, and Laurie called me and offered to review. I sent her all of the blood work data for the last two months and the diet information we had received.

Debbie and I stayed with Mom on Sunday night and Laurie came over for supper. We laughed a lot over old childhood stories, then we had a consultation about my dietary needs that made a whole lot more sense to us than what we had heard before. Maybe it's that we trust our peer group more, but with plenty of time and discussion which is sometimes missing or misunderstood in a medical setting, Laurie gave us lots of information. The new analysis... blood work indicates there are no problems with calcium, potassium, phosphorous. All current and recent past indicators of kidney function are in the normal range or explainable because of the recent surgery. Sooooo.... eat normally, but be aware of what is going into your mouth...particularly the sodium. Pay attention to the blood work...if something starts trending the wrong way, then make a change. Diet Coke....made with the purest of water...can't hurt. So now I go from a pie-with-cool whip diet to something more logical.

I was sitting in the oncologist's office waiting and I have access to my electronic charts. I learned that my integumentary system (skin ) is 2.13 sq. meters in area. WHO KNEW !!!!! That is up from 2.11 sq. meters about 6 weeks ago. I musta dozed off when they measured that...I haven't a clue. I think the 0.02 sq. meter increase must surely be from the pie diet. Does anyone else know how many square meters of skin you have?

I'm of an age where I scan the obits along with the sports page. I've noted that some folks die
after a long battle with cancer. I don't get the feeling that I'm battling cancer....I do not say that lightly, because my situation has not been what I would consider to be a hard road. I may not know what a hard road is. We are extremely fortunate to have found a warrior, Dr. Baltz, to do the battle for me. He's the warrior who encourages me and hands me this little pill about the size of a pinto bean to lob daily at the cancer cells. He knows what the Sutent is doing and isn't pulling any punches with it. My job is to keep the battleground tilted in his favor. I have great respect for the cancer, and I'm ready to have it gone.

Great Speckled Byrd

2009-11-01T17:05:00.000-08:00

I'm baaaaaaaaaAyck. I understand there have been requests for my return, and for this I am honored.
Quick reminder that this wee lil' blog is my perspective only. I could always be way off... I used to get the answers WAY wrong in English Lit when asked what some reading passage meant. WAY OFF. Disclaimer done.

My heaviest perspective right now is that of a parent, a mama. That perspective that we would do anything...everything... just so that one of our own doesn't have to experience a pain, a disappointment, a loss.
My darkest worry is having to explain any of this to my children, or to see a change in PawPaw affect their perception of him. Ethan told PawPaw this weekend that he was gettin' old. Now, Ethan thinks that if you have a beard you are old, so.. I don't know what tipped him off that Dad is aging, and we'll probably never know.

Back to my point... my dreadful pairing of Middle Child and Mama-Guts, all mixed about, hates that I can't take this all away from Mom, from Dad, from my sibligs, from the babies, from Granny... because I know that I would be fine.
I'm aggressive, I'm strong, I would fight it down and everything would turn out fine, 'cause I'm me... and I would feel like crap, but I'd keep doing and going, and be positive, and work, and sleep when I could, and I'd form my team, and trust them, and do what they said, and show up like I always have, and assure my family that I'm just fine. It'd just be better if it were me because I have no doubt that I could do it.
And then it hits me.... he's not glad it's him, but he IS glad it's him. Because its not his Debbie, and its not his Sam, or Erin, or Rachel, or his Alicia, or Shaun, or Matt, or Eli, or Ethan, or Emily, or Elliot.

He's glad it's him, because he knows he can do it.

Update from the OKW

2009-10-18T18:35:00.000-07:00

Well, at least with some side effects, you know the stuff is workin.

I'm in the off week after the first two weeks of round 2. So in engineering terms this would be

2A3.

There is not a Diet Coke here at home or in my fridge at the office. This must be kinda like

quitting smoking. I even thought about having a stash for just in case. The admonition was

to cut back, so probably the cold turkey approach is overkill. I tried the coffee in the morning

YUCK!!!!! I used to like coffee.... BUUUUUT I have taste issues going on so I'll try it again.

Diet Coke is available at all convenience stores.

The itchy scalp is back, and I have little pimples on my face like when I was 15. I can deal with that; it's just a nuisiance.

Last time I saw the oncologist, I told him that it seemed that I felt great while taking the Sutent and then in the off week stuff started showing up. He just kinda smiled. I can only imagine that if side effects are going to show up in week 3 and I was still taking the chemo, it might be more than a nuisiance. He's a smart man, I'll follow his instructions. "Chemo brain" is real. My processor doesn't work as quickly nor does it multitask at the same pace as before.

Probably the most maddening thing is fatigue. I'm used to doing whatever I want to, whenever I want to. I used to work all day long outside and keep on going even after I was tired. I've noticed lately that sometimes what I want to do is stop what I'm doing and sit down for awhile.

I think I'll try golf soon. First of all I need to take advantage of the cool weather of fall, and second, maybe having a tight right abdomin will straighten out my swing and eliminate that slice. Nine holes in a cart shouldn't be too bad.

The incision reminds me often that I'm not over that yet. I've been spinning with my buddy Joe two days a week. It's really kinda mosey spinning....we do peddle for 30 minutes but mainly we're catching up with each other...we don't believe in exercising so hard that we can't talk.

Then we go to the club restaurant and I get a big ol' cheeseburger.

We're discovering the pleasure of eating at home. I think it's great, the cook may not agree. Debbie is actually a good cook and is being a good sport. Lordy,I hope we don't go back to our vegetarian phase again. Actually this diet isn't as restrictive as first imagined. Salad is back. I'm tolerating the Coumadin (blood thinner) well enough that Dr. Baltz said I can add back the salad and he can adjust if needed. Maybe I was just bellyaching about not having many choices and he just had heard enough !!!!

I may have lost my unibrow. Either that or it's getting white like the rest of the eyebrows. I'll send a pic.... you may say dang! he's looking old. It's only on the outside...

We're hangin' in.

And now a word from Carrot:

When Bryan says he gets tired easily, he still sets a pretty high bar for himself. When I say I'm tired, that means I'm heading for the couch with the remote, an adult beverage, and lots of magazines. This weekend included doing a quick house cleanup after our year-long remodeling project because Barett and friends were coming to Debbie's Bed and Get-Your-Own-Breakfast. We got the three guest bedrooms made up and presentable (no boxes of undetermined junk lurking). Then Saturday he recycled 6-wks worth of paper, plastic, and glass; accompanied me on a shopping trip; put together and installed three new headboards; endured the highs and lows of a referee-influenced loss to Florida; entertained guests; went to church; walked around the yard to plan the landscaping remedy to rainwater encroachment into the garage; and answered some work emails. Who wouldn't be tired. Plus, he's managing it uncaffinated and unsalted. Give the man a round of applause. Better yet, give the man a reply! Since posting comments is daunting because the whole Byrd Village sees it, email is private. Try this one: greatspeckledbyrd@gmail.com. He'll love it.

No More diet Coke

2009-10-07T18:50:00.000-07:00

So, after YEARS of promoting low sugar, whole grain, low fat, fresh fruit, leafy greens, orange food, the nephrologist's nutritionist recommends to us a different way. It seems that potassium and phosphorus are also Bad Things To Eat for Bryan (along with salt). The list of Things to Eat in Limited Quantities includes bananas, canteloupe, tomatoes, whole grains, fiber, beans, peas, and fruit juices. And dairy. Don't eat in restaurants very often.

No more biscuits. No more ham, bacon, bologna, or sausage. Measure cheese in ounces.No more cashews. No more black-eyed peas. But, get this. . . drum roll . . . no. more. diet. Coke.

Now, she's used to advising patients who have chronic kidney disease. Being a One Kidney Wonder is similar but not the same. Bryan has to protect his One Kidney but also control blood pressure and fluid retention. It's just weird to hear that whole grain bread is difficult for his kidney to deal with but fruit pies are all right. Whole grain bread, no; English muffins, yes.

He can have all the steak, sea food, chicken, sugar, and fat he wants. (Not really, portion sizes count, but those foods aren't on the no-no list.)

The anti-vitamin-K diet is super-imposed onto the save-your-kidney diet. No leafy greens. No broccoli, turnip greens, brussels sprouts. No cranberries. No grapefruit. No pepper. No Mexican. No spice. No oatmeal. No sweet potatoes. No baked potatoes.

Beer is not good. No mention of wine. I think it could be classified as a fruit juice product which seems to be fine.

This will take some processing time. Not to mention the fact that MY diet requirements are definitely different: whole grains, lots of fruit, green veggies, low fat, lots of calcium, plenty of potassium, . . . . How does this mesh? Gotta work on it.

Maybe we should just have a few days of fasting or just some wine and cashews. Oh, wait, he can't do that. Apple pie and diet 7-Up? Plain popcorn and water?

We not only welcome but BEG for suggestions, recipes, life experiences, etc. I don't know where to start.

Carrot

The Southwest Classic

2009-10-05T18:13:00.000-07:00

Greetings from Dallas.
Our main job for the next few months, according to Dr. Baltz, is to be dull and boring. Just take the meds and keep on keepin' on. After we do that for awhile, then we'll check and see how things are. Well.. where do I pick up my prescription for being boring?

This weekend we went to Dallas to visit our friends, the Sutcliffes. This conincided with a trip to the new Cowboy's stadium where the Razorbacks and the Aggies of Texas A&M were kicking off a new 10-year scheduled game.

Vic said, "we'll take you and pick you up, it's not far." PERSPECTIVE.... in Mountain Home, Arkansas, 3 miles is not far to us... we live in Little Rock... in Little Rock 20 miles is not far. In Dallas, not far is about 45 miles... thanks Vic and Gail for hauling us around.

Bonus: We also got to go see Dr. David and Jenn Sutcliffe and Little Sutcliffe, Anthony. We're used to Moonpie Elliot.... Anthony is 4-1/2 months and he's on the other end of the bell curve. Sweet baby...I've dropped in a pic. His mom and dad are graduates of A&M so Anthony was all dressed for the game. He might have even had on an A&M diaper....above my pay grade I missed all of that.

I don't know how to arrange these pics....but they include: Taking Sutent in Cowboy stadium. Clowning while taking Sutent. Me in my Hog shirt and Anthony in full A&M fare. Nana in front of Cowboy Stadium. Inside the stadium with red hogs all around the stadium. Jerry Jones was a Razorback, you know.

Ok, I'm trying real hard to be dull and boring. I'm tolerating all of the meds. I do get tired sometimes, but hey I'm almost 6 decades old. Maybe I'll pull out that dull/boring perscription from time to time, but my original reaction to this thing and Dr. Baltz's admonition still holds....just because I have cancer doesn't mean that I'm gonna quit living.

y'all be sweet

One Kidney Wonder

2009-10-03T08:19:00.000-07:00

Apparently, OKW is doing fine. I haven't heard from them in DAYS, they're off to Dallas to watch 'dem Hawgs, so...
I'll try to pin him down and get an update. Mom did say that his hair hurt the other day. Interesting.

The Tie

2009-09-25T10:52:00.000-07:00

I'm sure the tie has been the source of much speculation..

So...here's the story. Once, about 15 years ago, I was in Italy on an equipment buying trip and

as is the custom of my wonderful Italian hosts, they presented me with a

gift as I was leaving. I didn't know it at the time, but we had been touring tile

factories in a specific region of Italy that was also known for the silk trade.

So they gave me this tie.... very nice, very expensive, pure silk, and it has little

geese all over it. It's a very unique tie and I've never seen another like it.

So.... I put my goose tie on one Sunday morning and wear it to church. After church our associate pastor says "what is that on your tie....it looks like sperm to me". When she reads this, she'll get a chuckle. And I still do occasionally wear that tie to church on purpose. I had never noticed...I had only seen it from up close and it is geese. see for yourself.

Isn't life funny sometimes.

Today, I finish the first round of Sutent. 14 days on, 7 days off, 14 days on, and I'll start a week off. Then we'll do it all over again. I do have some minor side effects. I think it's about time for my hair to turn white....this week I've noticed that there is a little irritatable rash under my hair. I can put up with it because I normally don't wear a hat, but I noticed it on Wednesday when I was in Houston looking at an old courthouse...and we had to have hardhats on. The other thing is that we spent the better part of Tuesday afternoon and Wednesday morning climbing stairs in and around that courthouse.... wore me out...I'll blame it on the chemo.

Gone to my 40th High School Class reunion this weekend...Should be a hoot...we're all old people now!!!!

Purple Hull

Really, it could be so much worse.

2009-09-21T19:45:00.000-07:00

FACT: Dad hearts Emmylou.

I think we have all been vascillating on the line of what is the appropriate respect/fear/attitude/ignorance(the verb)/obession to give the Rotten Kidney Disease, and I think we're trudging through... feeling it out as we go, but I can't seem to get myself too down about it. Really, it could be so much worse.
I have my moments of envisioning what I wear to Dad's funeral(sorry Dad... you are wearing a loverly suit and that goose tie that looks like sperm from far away), and how I'll explain it to my children, and if I'll need to delete emails and phone records so they don't sneak up on me.. I suppose my visions are psychological preparedness or something.... WAIT, not my point. My point is that so much more often than that, I am reminded that Really, it could be so much worse.
I see kids every day that have gotten the short end of the stick. Not all those kids, mind you... as I don't consider a disability a short stick AT ALL! Ethan is still asking me for a full leg orthotics and a G-tube so he doesn't have to eat dinner anymore. But some kids, for some reason, have gotten a shitty road laid before them. Suddenly injured and not the same, abused, or chronically ill child: those are worse. No question.
No offense Dad, I wish you didn't have Rotten Kidney Cells floating about your vessel, and this blog may label me "Cruel Loveless Daughter-Blogger PooPoos Father's Metestatic Kidney Cancer!," but I don't mind. I know you know that I know that you know what I'm talking about.
I know it may get worse. I'll worry about that if it happens. Right now, right this minute, I know everything's alright. If I'm so caught up in what tie Dad's wearing to his funeral, I can't appreciate the gigantic CORN DOG! he brought me from the game last weekend, or the magazines he mailed me that I left at his house (made my DAY!), or the brand new appreciation I have for Diet 7-up. Delicious!

Here's dad taking Chemo at the game. Thanks drug-nerds. I wish I had half your brain power.

This is us,
E to tha A to tha B

2009-09-19T06:33:00.000-07:00

If I pulled this off, I'm totally awesome. I didn't even have to call family tech support.

2009-09-17T18:54:00.000-07:00

Hey- it's the absentee blogger. Dad just called to tell me he had prepped a blog, but had gotten all the pictures screwed up and now couldn't fix it. He sent me the most twisted, bungled mess... but I fixed it. As he states below, we're living life as normal. The Oliver Bed and Get your own Breakfast (stolen wit from Mama)is underway... it's football season. You know... when we first got this diagnosis, I wondered if Dad would ever come over again. Here he comes. As Ethan said when I told him they were coming "Oh good! I love them!"
Hold please... here's Dad...

STILL KICKIN'

For those curious among you, things are going as expected I suppose. I don't know about the rest of the world, but I'm going about life as normal.I'm not sure that I had time for full time employment anyway. I've been a busy boy.
Eli came over early last week and he got the school lunch menus out and wrotetickets for me to come eat lunch with him on a couple of Fridays. I'll attempt to attach
a picture of how a first grader goes down a slide...makes perfect sense to me. That was last Friday, and tomorrow is Friday again. I think we're having grilled cheese sandwiches.

Don Bell's sister found some old campaign flyers from 1968....geeeeze that's over four decades ago. Don mailed them to me early on in this saga, and I just found them again under a pile of medical invoices. I've attached a picture. The theme of course was Byrd's the Word..... remember "popppa um maou maou" If I was more technically proficient I would download it and have it playing in the background as you read this blog :) The relativity of the old picture is that my newest side effect is exfoliation . So I'm getting a chemical peel whether I want it or not. Maybe when it's all done I'll look like I did in 1968 NOT ! And only $ 7600 per month ...cha ching

I saw the Urologist (Dr. Langford) today. Debbie had an appointment with him today so I went along. They all kinda said...."what are you doing here" then "oh, y'all have traded places" I didn't know that I was that memorable, but I'm tellin' you, I have been exposed to an incredible group of medical people that want to practice medicine. Anyway, she's gonna get that CT scan she's been wanting since I had one and maybe he can figure out the UTI.

My Momma came down for a visit, and we had a nice time. We also took a whirlwind tour of the State Capital Building while we were waiting for her ride back home. I think it wore us both out, but we did have a good time.

Off to Fayetteville this weekend. Hope we can take care of Georgia. This will be another test of the recovery. We'll keep you posted.

I barely have time to work anymore !!!!!

Purple Hull

Connections

2009-09-06T19:13:00.000-07:00

When we built our house nearly 28 years ago, one of our intentions was to be a welcoming place. Having our family and friends come here is one of the great joys of our lives.

Thursday, Diana came through. We talked about life in California and the problems with funding the libraries there. She is on the BOD and works to find creative ways to keep the doors open. (She's resisting getting an electronic reader--loves the feel of the book in her hands. And she hauled a Key Lime pie all the way from California.

Friday night, Rachel and Matt arrived with friends Meredith and Brook. We caught up with their worlds. (Meredith broke a bone in her foot and had surgery last week! She's a true Hog fan to trek from tail-gating to stadium seat.) Rigby, the dynamic puppy, enjoyed running, bouncing, and talking dog to Buck and Phoebe. Matt is working to make Coors a greener company. Rachel makes everyone look better in print or online.

Saturday we made the big Game journey. This picture of Joe shows true friendship. Bryan really wanted a dietCoke but the scouts only had water and real Coke. When the boy came back up on his return trip with a new supply, Joe was trying to get his attention but couldn't so he just sat down in the way. Bryan got his diet Coke. The world righted itself again. And we won the game. WhoooPigs!

Today, Judy and Roy (Alicia's parents) brought Eli and Emily out to play while Sam and Alicia held another open house. The place was full of energy. We had a full table for dinner and a little bit of not-a-school-night lingering.

Typical? Yes. Tiring? Yes. Feels good? Absolutely. It's why we built the house. It's why we're here.

Love.

Well, I think we have a side effect here

2009-09-06T18:18:00.000-07:00

Hi all,
I finished my first 14 days of Sutent on Friday night so now I have 7 days off then will take it up again for another 14 days and then off another week...and thus cycle 1 will be done. The number of cycles is at the moment undefined.

Last night we went to the Razorback game, and before the game we stopped at a local place with our friends Joe, and Mary Helen, and their son Chris. I ordered my favorite.... Pizza...thin crust...italian sausage...light sauce... extra cheese. And man, was that a good pizza. Game went well, I stayed for the whole thing and life is good!!

This morning I decided to have some California Key Lime Pie (story to follow in this blog) for breakfast. It just as well have been puried newspaper. No taste... so I'm thinkin' did I burn my tongue on the pizza as I often do because I like it so much can't help myself? Nah. I would have noticed it and it's always the roof of my mouth. Following that with a tasteless diet coke confirmed the loss of taste. Even a glass of water tastes like you would think stagnant pond water would taste. That would make the milestone at day 16. Oh well, I'm sure it will come back. Either that or I might lose that 5 pounds again. Removal of a kidney got me down around 15 pounds, but I wouldn't recommend it as a diet.

Now to the PIE. My cousin, Diana Dearmore, lives near Sacramento and she flew in late
Thursday night to spend the night on her way up home. She unloaded from her rental car a perfectly kept Key Lime Pie. She had bought that pie in California, checked the TSA regulations for flying it on the plane , and was prepared to argue with them if it couldn't make the trip in the passenger compartment. I have to tell you that my dear cousin wagged a key lime pie around all day via Southwest Airlines so she could make sure I didn't run out. It arrived intact and I had eaten some Thursday night, Friday, and Saturday (sharing of course) so I know it was good. I shall not waste another slice until the taste buds return. That's just one of my crazy cousins. Actually I'm one of 30 first cousins on my Dad's side and none on Mom's side. I do have more than my share of wonderful kinfolks.

Tomorrow is Labor Day, and I plan on doing as little as possible again. I really am feeling about normal for somebody my age. Joints ache sometimes, think i'm catching a cold maybe.....but
to me thats pretty much normal. I'll have an appointment next week with a nephrologist. Since I'm down to one kidney, Dr. Baltz says I need one to adjust b/p and all sorts of other things that kidneys do. Who knew that kidneys were involved in adjusting b/p. Maybe that's why mine had gotten on the high side of normal in the last 5 years. Now after surgery, it's in the high category in that the bottom number is high. I think it is partially from the Sutent and partly from just being an OKW. Never can have enough Doctors I guess. I've run into a good double handful of really outstanding ones in the last 8 weeks.

Seems like a long, disjointed post again.
I'm feeling the vibes from y'all.
Purple Hull

Hugs

2009-09-02T18:10:00.000-07:00

That's my favorite part of the visits, the hugs when the doctor comes in. Nice.

The scans don't show anything new. That's good. Blood levels stable. That's good. No side effects from Sutent. That's phenomenal! Doc says Bryan is in the top 5% of folks recovering. . . I asked why. . . he said some people just do better than others. It must be frustrating for scientists to not be able to pinpoint the variable that makes the difference. Prayer? Friends? Driving a drop-top? Playing with grandchildren? Having an amazing wife? Laughing? Genes? Drug therapy? We'll take the result, whatever the precipitating event.

Dr. Baltz did say that it's the scans three months from now that are important. A lot can happen in three months. Football, leaves, Halloween costumes, parent-teacher conferences, Thanksgiving, making tile, finishing this remodeling/decorating project, just life. . . .

Go hug somebody. I was directing traffic in the hall: "Walk on the right side! We won't let you have a driver's license if you can't stay to the right!" As I spread my arms intending to show kids where to walk, one kid just melted into me, obviously needing a hug. Now, teachers are warned about the dangers of touching students. All those accusations of nepharious intent---but, this kid will always be connected to me and will listen when I talk to him. So sue me.

The One Kidney Wonder is working madly to finish all the invoicing and posting and whatever he does. Thanks to Sam the Computer Wonder for connecting Dad to his office computer from home. Magic.

We love all of you. And we love your comments. Notice the tiny little word down there? Click on it and write back to us. You have to use the drop-down menu to choose what email account you're writing from. And you might have to copy those strange letters to show that you're real and not a computer-generated response. All bloggers love comments. And these crazy Byrds love ALL of them!

Navel Gazing

2009-08-31T18:24:00.000-07:00

I had to explain to Bryan what that means: watching yourself to the exclusion of everything else. We haven't devolved to that point, but after 10 days of Sutent, we've both done a lot of detailing every twinge. So far, so good. Sunday he felt tired all day, but he had been playing with consecutive grandchildren since Friday afternoon. That makes the most healthy and enthusiastic grandparent take a deep breath. Today he's felt just fine. He worked all morning then went to see Bobby Petrino at the Touchdown Club then worked until 4:00 when he left for his weekly check-up. After having his blood drawn, he went outside to make some phone calls and saw a fire truck and an ambulance pull into the parking lot of the clinic. Later, the nurses all came into the waiting room and said they had to reschedule all the remaining appointments. No one actually said what the emergency was, but it was obviously very dire. Bryan assumed that it was someone in the chemo room. That's certainly going down fighting.

Segue to my daily life: Tomorrow afternoon there's going to be a pep rally at school. I have to escort my 7th period class that is excitable during boring grammar lessons. They'll be over-the-top wild when given encouragement to scream. I bought ear plugs just for the occasion. It's funny how being in the midst of a college football crowd doesn't faze me, but middle school kids are almost unbearable when they're off the chain. Think of me.

The Arkansas Razorbacks kick off the season Saturday evening at War Memorial Stadium in Little Rock. Our seats are pretty good, and we got the handicapped sign for the car, but, still, it will be a daunting event for Bryan to get into the stadium and then endure the stairs, getting up and down, etc. We'll just take it slowly. There will be 10 of us there; surely someone else can go on a diet Coke run. Note that at no point has OTW said that he'll just give his ticket to someone else. There's a reason why he's always in a red shirt, ya know. Today he didn't even have a reservation at the Touchdown Club. It was supposed to be sold out. He went anyway. I told you he's an optimist. He dressed in his Razorback shirt and khaki shorts; he looked like a cheerleader. The "girl" at the desk said, "Cute knees," and let him in. Of course, he saw friends who had an empty chair. If I didn't have to teach school, I'd have been there.

(BTW, Brett Favre is doing a credible job tonight. Minnesota is ahead right now.) We're glad this is a Baton Rouge year for the LSU game. Winning three years in a row just might give Bryan a heart attack. We'll just have to watch it from the couch or maybe Shaun's couch. (We probably don't have to worry about the three-peat, but we always hope.)

Since we talk about all our ailments here, I'll share that I'm on my FOURTH antibiotic for a persistent UTI. Some kind of super bug has ahold of me. It doesn't hurt anymore, but all the re-checks show it's still here. Since the first round didn't kick it, Dr. Cranford has been growing a culture and checking the efficacy of each antibiotic. Cipro--no; Levoquin--no (sorry Brett); tetracycline--hope so. After all the expensive ones don't work, we go back to the old friends. I just can't get pregnant while I'm on it.

We'll let you know when we get the details of the scan. I'm sure I'll get through the pep rally.

Five Days of Sutent and counting

2009-08-27T13:38:00.000-07:00

Hi y'all,

Ok, we're five days into this chemo..and I think it's going well. I haven't felt any side effects except being super aware of how I'm feeling....I think I probably ate too much BBQ the other night....and added Key Lime Pie after, then blamed it on the Sutent for feeling a little "different" at bedtime. There is probably a psychotic propensity with diagnosis for that, and it could be cured with a daily ( or hourly) shot to the belly, so I'll just keep those symptoms to myself.

So, this morning I had to get up early and drink about a pint of Barium laced with banana flavoring so we can get a neck to knee CT scan done. This is the base line...find all the bad stuff. Well, my self-awareness psychotic disorder kicked in and I was afraid I couldn't get it down, or keep it down.... but it went fine....thus my self-diagnosis of the self-awareness psychotic disorder. As a Presbyterian, I can gladly say "whew! I'm glad I made it through that."

Well, so about that CT scan. Dr. Langford ( best darned Urologist in my book ) said that he

had reviewed the scan and there were no changes from the pre-operaton scans EXCEPT there was no rotten kidney on my right side. Vena Cava looked good. ( Venacava... sounds like a good name for a sailboat. I've got one that's been sitting in the yard for 3 years begging for the lapping of waves against her bow.

Bottom Line Good News, the battleground has not shifted! The scans and written report are headed over to my main warrior, Dr. Baltz. He'll give them a look and we'll continue with the plan as it is set or change it as the Capt'n sees fit. We'll see him again on Monday.

I took two road trips within the last week.

First was on Sunday to Mountain Home. My Aunt Margie, my Dad's sister, died after a long battle with Alzheimer's. She was 91 and in addition to being my aunt, she was forever the librarian at the Baxter County Library. Anyone I ever talked to about her would say " I remember climbing those steps to the library up over the fire station and she would help me find a book or read to us in the summer." I feel both the sadness and the relief for my cousins. I can only think of the celebration of the reunion of her body and mind.

Then on Tuesday, my buddy Joe and I drove to Greenwood, MS to visit Viking Range, a customer of mine. We made some tile for their restaurant, Giardina's, associated with their hotel and cooking school. I needed to go see it. You can see pictures at http://www.restorationtile.com/. We got to drive through lots of soybean fields and corn fields. Greenwood had a sign at the city limits that said " Cotton Capital of the World". I was surprised that there wasn't much cotton, but I suppose I can say, "Joe , we're not in SriLanka anymore." What a deal, a road trip with my good friend, and I get to write it off.

Wow...that's a lot of writing for one day... time for my nap.

Purple Hull

Sutent: Round One Day One

2009-08-22T19:35:00.000-07:00

We have received the highly-touted medication. We're just incredulous over how much it costs AND that NovaSys is picking up the tab. We have met our deductable and our out-of-pocket max for the year (until October1 when we start all over) but we're still amazed. Thank you doesn't seem adequate.

Now we watch. Next week he will have a whole-body scan which will be examined in minute detail. That will be the baseline for measuring success. As long as no nodules grow and no new ones appear, he is considered stable. Any decrease in size of the lung nodules is over-the-top wonderful.

Everyone who has seen or talked to OKW since surgery knows that he is not only healing quickly but also still the most optimistic person ever (unless you get to talking about politics; don't even start). One person of a certain authority chose to cut out all this positive thinking by reminding him that the prognosis for RCC is poor. Without missing a beat, Bryan replied that he intended to change the average. I still can't fathom why anyone thought that we don't know what's going on. We just refuse to let it get in our way. We're realistic and (how I hate this word) pro-active. We're also not holding back. I haven't actually seen the sign, but our friends in Texas tell us that a singer (Kinky Friedman?) decided to run for governor (?) and his slogan was: Why the hell not?

So when you see us out and about, taking it all in, we're just following Kinky's advice.

Getting Short of Pie Around Here

2009-08-20T17:14:00.000-07:00

.... and it's probably a good thing.

Hey all you guys. I'm doing well here. I've been making the Doctor rounds since it's been a full four weeks since the notorious kidney became toxic medical waste. Saw the Urologist ( he's the guy that actually removed the kidney ) on Monday and he and his nurse just kinda shook their heads and said you look in great shape. I think it finally dawned on me that removal of an organ is MAJOR SURGERY. But, anyway I seem to have impressed them with my ability to bounce back. Saw the Cardiovascular Surgeon today ( he's the guy that pulled the intruding tumor out of the vena cava ( I have a vision of both surgeons ahold of it pullin' that tumor out of that vein). checked the vena cava for damage, sewed up the carnage and stitched and glued me back together ). I commended him on the closing of the incision. If it's as pretty on the inside as it is on the outside he's an amazing surgeon. He also said that "we're through with you". I'm completely turned over to the Oncologist/Hematologist now.

Well, truth be known, Dr. Baltz ( the Onchologist/Hematologist/Cheerleader to a mottley band of Cancer Patients/ Miracle Worker/ Man that really really really likes to Doctor) has been in charge of what I'm gonna do for about four weeks now. I have seen him in the hospital as well as in his office for several visits. We're now about to finish up the little shots in the belly that prevent throwing clots and bad things like that that are part of the MAJOR SURGERY thing. I get Debbie to give me the shots because I can hardly get something out of my own eye and I just can't wait for that part to be over. She's been a trooper, giving me those shots! Low and behold.... zap.... last Monday he says you're deficient in B12. Who Knew? And guess what.... a shot in the belly once a week from now on. The nurse made me do it myself DAY-UM!!!!! I suppose it must take a hematologist to find such things because folks been taking my blood for years for annual checkups, etc. Everybody ought to go get a hematologist and don't get low on B12 'cause you wouldn't like those little shots either.

The SUTENT has been approved. I guess it is chemotherapy although it is taken orally instead of intravenously. Thank God for PhD medical researchers that find better things and better ways to administer them. Of course, I started talking to Google. Dr. Baltz told me to not read that stuff....but hey, I got nothing to do all day. Scary Scary Scary. So I asked him
last Monday, what do I need to get prepared for? First thing he says...." you been on the internet?" He looked me straight in the eye and said I don't expect you to have any side effect from taking this drug ( or something to that effect ). Whew..... big sigh of relief. This guy likes to Doctor. I'm going to see if he can really get my hair white like my Grandpa Dave Byrd.

I'll have a base scan mid next week and then take my little pill every day for two weeks and then lay off a week and then repeat. Go about my business as usual. Oh...speaking of business...... I've been going in for 2-4 hours a day. I've found out that that works !!!!! I concentrate on what I need to do.... push my employees up a little.... then go get lunch and go home.

I know this must be rambling, but hey ... I've had anethesia ! I'm gonna try to post a picture of me right now...but i gotta call one of the kids to figure out how.

Purple Hull

2009-08-17T21:29:00.000-07:00

I've got writer's block. I went to preschool orientation tonight and drank too many beers. Fun juxtoposition of nouns and verbs, ehe?? So (I like to put one finger up when I say that) So! I'll have a contest of which commenter can come up with the best topic for my next blog post. This will also be a test of who's still reading, as a blogger's only salary is the variable reinforcement of comments.
Dad understands that postings can't be rushed. We spoke of it the other day. They can't be hurried. They can't be forced. They rumble in our psyche and bust out when appropriate (or inappropriate), in their own time. I will wait, or I will capitalize on one of your ideas. I've always been an opportunist. Sorry Mama, I gotta just wait.

Halariously, tonight over beers at preschool orientation (i can't get enough of it!), a friend was telling us how she decided to be "politically correct" and take on her lesbian parter's last name, so her name would match her childrens', and ever since then her life's really taken a nosedive. First, her Great Dane was diagnosed with an inverted vagina. THEN, her gigantic mercedes SUV got run into by one of those fools with no insurance and she had to drive a rental Buick. THEN she got pulled over by the cops 1/2 mile from her driveway with three sleeping kids in the back, unbuckled, in her sister's car, without a license, without insurance (she got 4 tickets).
I was gonna top it off with "Yeah! I totally know whatcha mean! I like totally was flying high after I got down to 1** pounds and found the right undergarments to get my body into the tinyest bridesmaid's dress than anyone could ever choose (thanks sista!) and then I answered the phone one day and my Dad has CANCER!" but it would have totally killed the moment.

And I like funny moments the very best of all.

Contest on. I dare you to win.
EO

Back to Normal

2009-08-12T18:17:00.000-07:00

Dr. Baltz asked me whether I thought Bryan was ready to drive. I said that he might risk himself but he would NEVER risk the T-Byrd. So, he's off on his own tonight, gone to play music with the Pickoids. He took his mandolin since the banjo weighs too much for him to carry. He also shaved this morning. I didn't even notice until lunch time when he asked me how I liked it.No more beach-bum beard. Just normal.

He has been amazingly calm about ART. He has been in a few times to do some trouble-shooting, make payroll, and visit a little. But then he comes back home. How wonderful to not worry about his business. His crew is making tile, sending samples, answering crazy phone calls: "Do you ship tile?" No, we just make it and pile it up . . . .

Yes'm, we'll have the whole pie...

2009-08-09T18:47:00.000-07:00

We were sitting at the annual ART board meeting on Friday night, and it was time to order dessert. Dad asked for a piece of Key Lime, I did too, then dad said "we'll just take a whole one." The nice woman with a foreign origin said "dee whol pi-ee? it wheel coust ** doll airs!" Dad said "yes'm, we'll have the whole pie."
This will be important later... you'll have to read on to see...

I think the hardest thing to swallow about this whole diagnosis (for me, remember... my perspective only...) is the irony of it all. Dad worked for almost 30 years for an established tile manufacturing plant. He worked hard because he had a nest of Byrds to feed and clothe and take on vacation. He didn't complain about his job, I only have this perspective because of the sudden change once he was self employed.
He didn't complain, he went to work, he was suddenly disappointed in some choices they made, and was forced to go out on his own. Thank goodness for their poor choices, as a happier man ensued. Now, he works equally as hard for himself, builds and grows ART, sees its success, gets all his kids' weddings paid for, buys himself a two-seater, and drives it to get his cancer diagnosis. Disappointing.

Dad has always been a buy the whole pie kinda guy, but not necessarily for his own enjoyment. There was this plaquard that used to hang on the upstairs bathroom wall, until the Great Renovation of 2009... it said My father doesn't tell me how to live, he lives and lets me watch. We have been watching. He's of a service-dog mentality. He likes to help. He likes to drive old ladies to church. He likes to help people on Christmas when their pipes freeze and bust. He likes to move walls for mom so she can say "ooh! you're strong!" He likes to save his grandchildren from their parents. But finally, finally! he's just helping himself to all that is his. It was nice to see at the beach.

All that is his. Maybe a diagnosis helps you see what is yours, and finally enjoy it as your own. He took a nap every day, he wandered to and from the water, he ate cheeze puffs with Emily, he laughed at and with the fools his daughters chose to marry, he goo-gooed with Elliot, he pow-wowed with Eli, he talked about gravity and rust with Ethan, he ate his pie.

The beach has always been a re-set point. Summer's over - School's starting. Wow I'm jiggly in this bathing suit - I'm going to work out as soon as I get back. Rachy's engaged- There's gonna be a wedding. By the time we come back, Elliot will be born. Next year all the kids can sleep in the bunk room. Next year we want a house with a pool. Next year Dad will have been through a year of Sutent and his hair will probably be all white. Next year. Next year. Next year. It's why we go... to reset for our next year.

This year, we'll have the whole pie.

Ensconced on the beach

2009-08-03T05:50:00.000-07:00

OKW became ensconced on the beach yesterday. He wasn't able to participate in the annual sunshade construction project but he did get to enjoy watching the kids playing in the sand.

Yesterday afternoon he introduced the grandkids to "the scar". It was ignored for the most part, we'll see as the week progresses.

Ahhhh

2009-08-02T18:40:00.000-07:00

You know how some places feel like home, even when you're not home, just that feeling of home...
We're finally home. The air is warm and salty. We're sitting in cheap plastic chairs on a weathered deck, everyone is still intheir suits from our day. The new kids are all asleep, so it's just the old kids...the original beach crew.
We used to go to the Murmuring Surf... It was in Destin, and was a glorified beachfront camping ground. It had cinder block cabins, iddy biddy beds, iddy biddy towels, and big big fun. We went every year, sometimes twice, sometimes thrice, until some hurricane blew it to smitherines. We had to branch out and found out that other places have tvs, ovens, microwaves, and more than one bathroom! Shazaaam!
We miss the physical Murm, but still murmur amongst the surf...every year, every body, we all come home.

2009-07-30T21:05:00.000-07:00

Welcome back Dad. Per report of my sisterbaby, he didn't take a pain pill today. That is so me. I don't like how those make me feel... neither does he. All wacky and fuzzy. I talked to him a bit ago as well. Said he's drinking Diet 7 up?! That's creepy. First of all, of all the bevs on this planet, Diet 7 up? I'm not knockin' it... I guess I should try it... but just a little odd. AND... he said he drank a cup of coffee with mom the other day. NOT A DAY IN MY LIFE HAVE I SEEN MY DAD DRINK SOME COFFEE... and I'm going to be 32 this fall.
I suppose with a diagnosis like this, one may retreat to the antithesis of the sequalae.
I will enjoy enjoying a cup of coffee with dad.

A little politico... funny how you see things you never did before... would I have ever clicked on this New York Times link a month ago?? Um, moment of clarity.. I won't post the link, because it would send mom into some sort of grand mal seizuresque fire spitting skin peeling episode, but it was all about how health care companies should ration, what drug? Sutent. Is it worth it this Sutent? Should our premiums go up so some dude can extend his life with Sutent?
Suddenly, this dude happens to be Dad, so yes, it is worth it. Keep payin' your premiums and I will too. Worth it.

I have been urged to post by the patriarch via the matriarch. It is, afterall, my blog, and they are looking for any changes in perspective.
Perspective 1: Dad didn't die during surgery. This is good.
Perspective 2: Was worried he would be really creepy sick during recovery, alas, he was only wacky that one day, but slept it off and got back to normal. This is good.
P3: Perspective is a long word to type over and over, so i'm going to abbreviate (another long word).
P4: I'm envisioning some sort of scar busting incision bursting splatter of ooze if one of the grandkids (my Ethan I speak of specifically) forgets that PawPaw is not their usual trampoline o' fun. I got the big truck stuck in the sand once at the beach, and that had exponential consequences. I was pregnant and so obscenely chubby elsewhere, that the family took pity on me and didn't scold me so hard for having to get wenched out of a sand ditch.... Anyway... I'm worried the scar busting gut ooze would be all my fault, and that would be bad.
P5: Dad's not dead. I know many people in my circle who can't say the same thing, and for this, my perspective remains the same.
P6: Luckily, for us kids of D&B, I don't perceive this diagnosis bringing anything to the table that wasn't here before. We love eachother, we show up on eachothers doorsteps, we tell eachother that we need eachother. We go to the beach. We call just to say hey. If that bumper sticker is true, and in case of rapture my car is suddenly unoccupied (mom got a kick out of expalining that one to us in the back of a doo-doo brown VW Rabbit in the early 80s), then there woulnd't be anything left unsaid.

Perspective complete. Must leave my life as writer, and return to life as Mother of Two Trying To Pack In One Suitcase Because I'm Also Married To An Accountant And That $25 Extra Baggage Fee that American Airlines has Started Could Better Be Spent Towards An IRA or A Savings Account so We Can Retire Someday Fund so We Hope There's A Washer and Dryer There Because Everybody Only Gets Three Pairs of Undies.

Lervy Dervy (hang around with us enough, and you'll learn our Byrd-speak)

Lervy Dervy, Meaur.
E

Living with a New Ride

2009-07-30T17:02:00.000-07:00

We actually had an offer for a trade! Thanks Vic and Susan; we think your kind offer is awesome. Trading the T-Byrd for your car would have been a great solution. We actually got your phone call as we were driving home in the new car. We just didn't know how to operate the hands-free system and hung up instead! Anyone who missed the offer can still come ask to drive the car. I don't know whether OKW will agree, though.

We went to three different dealerships today and finally made the deal. It's a good time to buy a car. We got LOTS of attention. This car has more computer power than early space vehicles. The absolute best feature, besides safety and functionality and all that, is the GPS system. Many of you have heard the stories of my driving adventures. Lost R Us. Cheryl Dawn and I drove past our Pa-pa's house because we were talking and driving at the same time. Yes, he had lived on that same road our entire lives. Bryan asked me to pick up something from one of the tile distributors in Maumelle. Yes, I had been there before. No, I didn't find it until I had passed it twice. So, I am just tickled to have a big ole screen that will show and tell me where to go. (CD, our road trip is on.)

The One Kidney Wonder has made great progress since getting home. First, he slept a lot. Then he started moving around. Having construction workers in the house helped; he had to go see what they were doing. He's gone up and down the stairs without incident. Today, we stopped by ART on the way to the car lot. Everyone was thrilled to see him. I had to shepherd him out before he got too tired to car shop.

His hoarse voice is a mystery. It's too late for irritation from the intubation during surgery. I hope our resident speech path will solve it for us next week.

We are grateful for our permission to make the Great Annual Beach Trip. We are taking all precautions. What do you do when you get a diagnosis of cancer? You live.

Wanna Trade Cars?

2009-07-29T18:24:00.000-07:00

This is, admittedly, a long shot, but here goes. Y'all know that Bryan drives a sweet little black Thunderbird. The drop-top, as Charles calls it. Problem is, he can't get into it right now. I have a perfectly comfortable Buick, a grandma car, the kids call it. Second problem, it might not make it to the beach. So, we have to either buy a new car tomorrow or rent one to go to the beach. Both are possibilities; I definitely need a new car.

Here's where this gets fun. Do you happen to have a comfortable, reliable, smooth-riding car that you haven't smoked in that you would like to trade for a week of driving around looking good in the T-Byrd? Let's talk, friends.

Mama Byrd

Finally Home

2009-07-28T19:01:00.000-07:00

Well, the numbers were ok this morning and so OKW got released. We are officially through the initial stage. The rotten kidney is expunged and low the KORK is healed !!!! uh NOT

Surgery wasn't bad, initial recovery wasn't bad, being home definitely isn't bad. I've got some healing to do, but I have good genes and good meds and good friends and good Doctors and I'll get there.

I'm liken these Hawaiian shirt pics. Mike couldn't be here so he sent a pic with his Hawaiian shirt and a lei. He wore it to work. I'm sure lots of tourists now know the story of KORK. Then I got a package in the mail with two leis inside from him. If you've been looking for the perfect gift and haven't a clue, they have it at the tower. They may have the only one of that thing in the region or maybe in the country. I modeled the lei in my coming home pic. Pretty snazzy huh.

I thought I looked a little thinner than when I went in the hospital. That wouldn't be a bad trend
and we'll see how that goes. Gotta do the blood thinners so I now officially have a prescription to not eat Broccoli, Brussel Sprouts, Greens, and other green leafy things.

Jerry lives here in LR and he wore his shirt to work on Thursday and then dropped by to see me after work. You can't go wrong with a support network like that. He was by the hospital a couple of times.

Shaun got Ethan and Elliot and himself all Hawaii'ed up for a pic. This guy deserves a big pat on the back and a cold beer. Taking care of a 3 year old and a 5 month old plus yourself while your sugar is 200 miles away lookin' after her Momma and Daddy is yoeman's work. One of Shaun's comments was about my pasty white legs..... wait until he sees this scar !!!!!

Talmon has been by several times. I would call him the keeper of all the good stuff from the old

Mountain Home Class of '69.

Matt came down for the weekend and was the recipient of a Hawaiian shirt that Carrot bought

for me. Since when have I been a medium? He has loaned us his new bride for over a week and we have enjoyed having her back under the roof. Oh, back to the medium size thing.... she gave Sam some pajama's she bought for me... like 3 pairs.... all size Men's Small..... I think we're gonna have to lift the leaves up and scan what's going on inside the carrot.

My brother Barett and his family were here on Friday and Sunday. I was on a cardiac floor but they let us have our hookielou anyway. It was just great to get to visit.

My brother Hiram has been here all week. He was quietly tending to little details at my plant, making sure things ran smoothly.

And LORDY the phone calls, I love hearing from all of y'all. There are scads of e-mails to answer and messages to return. Carrot has been relaying your messages from her email.

I just took to big ol white pills that should put an end to my evening. nite nite all

OKW

2009-07-27T18:36:00.000-07:00

St. V's still won't let Moo and Poo into the blog... so I post this for Moo~

Sunday must be go-see-people-in-the-hospital day! Besides Rachel, Matt, and me, we also saw folks from church, Barett and his family, Sam and his family (including Eli and Emily), Jerry Smith and Talmon Preyer (college/hometown buddies), one of the Pickoids. He held court in the misnamed "solarium" which is an interior room with fluorescent lights and lots of chairs. He was a tired puppy today. Having napped much of the day, he texted Rachel requesting a Reuben sandwich because the hospital food is unappealing. (They sent turnip greens which I ate quite willingly.)

He's still in the hospital because his blood isn't thin enough yet. There's a target number (2.0--2.5) that the doctors want to hit before releasing him into the wild. His number was 1.6 today. They come draw blood at 3:00 a.m. Sleep is not the reason to stay. His pain is being well-managed by oral meds. He's showering and shaving himself. He's also figured out how to get into and out of bed with the least amount of stitch pulling.

We have really been pleased with St. Vincent. The nurses are both skilled and friendly. Sheila got him a diet Coke then ordered ham sandwiches for him after he turned up his nose at the first tray he was given. John stopped to explain the blood PT/IMR test and what Bryan's numbers have been. Each one has listened to requests and been as helpful as a floor full of patients allows.

HOLD THE PRESSES!
Dr. Baltz just came by. He said if Bryan's IMR rises to 1.7 he can go home tomorrow. He explained more about Cumadin saying that he may need a daily injection as well as the oral tablets. THEN I asked if he has heard about our FAMOUS BEACH TRIP goal. After hearing about it, he said we can go, no problem, come see me when you get back, have fun. When Bryan said, "Now, I don't want to do anything foolish," Dr. Baltz said, "Wait, you still don't get this cancer thing, SHE's in charge. You do whatever she says."
I assured them both that I will worry about everything. For now, we're almost giddy.

We will send some great pictures from the beach!

I feel like if there were ever a time to buy a man some shell-art from Alvin's Island, this is the time. Maybe an airbrushed visor... something.... Dr. Baltz deserves something....

2009-07-26T14:18:00.000-07:00

He's wireless, and ready for the hula.

2009-07-26T09:54:00.000-07:00

FROM OKW! The hospital network wouldn't let him sign in to the blog...

Hurrah!!!! it's like being in 6th grade.... cause/effect if you
pass gas, then you get to eat. Who makes up all these rules
anyway?

Finally got my first tray of hospital fare on Saturday at noon. I
ate the roll, and the dessert. Debbie ate the turkey, and the thrice
cooked brockly (sp) and the mashed potatoes. So it looked like i
cleaned my plate. Doctors like that and want to measure. I could
bore you with details surrounding body elimination systems, but
suffice it to say everything is working.

My two main surgeons promptly took the week off after cleaning up the
RK. That musta been overwhelming...don't worry, I'm left in
extremely capable hands. They're talking about goin home on Monday.
I hope Debbie is ready for that, I'll try not to be a grouch.

Rachel and Matt ruined my breakfast this morning. I had a choice....
fluffy flat scrambled eggs and a tough bisquit St. Vincent's
Special OR some Purple Cow Pie.....geeeeze, I'd never seen that on
the menu before and I can assure you that it went down smoothly.
There is just something magical about purple ice cream. Thanks Matt
and Rach.

The OKW is doing just fine !!!! I'm enjoying hearing from every
one of you and as my Daddy would say " I love all of you".

Purple Hull

2009-07-25T09:57:00.000-07:00

Finally! They served the man a drink. Now on with the Hawaiian theme. We are still hoping that we can all go to the beach. It just wouldn't be right if all the people aren't in attendance, but we'll do what we have to do. PawPaw is usually the one that catches the early rising grandkids to give us parents some extra sleep... I do say that if he gets to go this year, he can be off early morning buscuit and kid duty... JUST THIS YEAR. We'll wake up with our own children if we have to. Err ee err eee (that's me rubbin' my eyes). Now, if shnazzy dress could ensure our trip, then I have no worries!
Here's Mike. He's known Dad since Dad's been around. They grew up together in MoHo. That's always been what I call Mountain Home. I remember Mom telling me it was disrespectful once. I don't remember why. I still call it MoHo. No disrespect intended.

The Oliver manboys... I was going to donn my coconut bra and hula skirt, but I'm only 6 months post partum. I hope that image gets out of your head sometime today.

Here's Jerry. He was Dad's roomate at U of A. I'm sure he has some stories to tell.

And Matt. I swear we don't intentionally torture new family members. Mom asked him to nicely put on this peach number last night. He obliged. Who could say no to a steamed carrot?

Talked to OKW a bit ago... he's enjoying his Diet Coke and looking forward to more tubes being yanked from his body. They're transferring him from needle meds to oral meds today, so if we ever look back and wonder when his addiction to pain pills started, it's today. I'm just kidding. His only addiction is caffinated, calorie free, and delicious!

Aloha!
EO

2009-07-24T21:01:00.000-07:00

Good night good night. Barett, Michele and Sara came by on their way to Mountain Home. Then Dr. Baltz came, we turned on the overhead light to see him better and then started asking away. In a nutshell here is what he said, his recommendations and what's gonna happen in the next month ...

- They will do a new set of scans in about 3 weeks after Dad has healed from the RK surgery. This will give him a new starting point to know exactly what we are dealing with. A radiologist who specializes in cancer will take new measurements.

- In the next couple of weeks we will choose the drug of choice to start his treatment. Once the scans are over we will start treatment.

- Success is measured by stability. If the tumors aren't growing, that equals success. If they shrink - that is great.

- Dr. Baltz's drug of choice is Sutent. He has 6 patients on it currently and 2 are doing very well, 2 are doing well and 2 are doing ok. I asked what "ok" means and he said "the tumors are stable." So that's good news.

- There is a new drug coming out next week that might also be a possibility. We've got lots of decisions. Baltz said there are too many choices but that's not always a bad thing.

- No need to biopsy the lung mets and put Dad through that because it won't change the course of treatment.

- Interlukin 2 or whatever it's called makes you feel like you have the "nuclear flu" and the other drugs are more successful with fewer side effects. Izzy Stephens (Gray's) is currently on IL2 and we all know she had some rough days.

We all agree that we like Dr. Baltz. He had the right amount of humor and knowledge and we all felt good after talking with him. He listened to all our questions and repeated some stuff for me since I have horrible listening skills (probably genetic from Carrot and Purple Hull). He also said that most of the stuff we are reading on the Internet is old and that RCC drugs have come a long way this year. He told Dad they'd meet in his office when he's all healed from surgery and "the next time I see you wear a manlier outfit."

OKW update: he got his bandages and the tubes sticking out of his neck removed. He has one gnarly scar.

He's ready for some Key Lime Pie. Nurse Nancy II said it sounds like pudding to her (one of the first foods he'll get.)

Nighty night.

Sisterbaby

2009-07-24T10:06:00.000-07:00

Hey peeps. I just got to read the path report. They confirmed that the tumor was indeed renal cell carcinoma, clear cell type and gave it a Fuhrman grade of 3. I understand that the grading indicates the cells' degree of deviation from normal. Dr. Meadors is in here now, so I gotta listen..........we just asked about the beach trip again, and Dr. Meadors just told us that the line between fun and dumb is sometimes transparent. I love that line. Meadors said he looks good, predicts that it will be Monday probably before he gets outta here. He gets his neck port out today, and they'll take his bandages off today. They'll take his epidural out tomorrow. Big John (man nurse- calls himself an adrenaline junkie) is about to take out the neck port. I'm heading back up the mountain to Fayetteville to tend to my boys. Shaun is an excellent Daddy, but we all know it's easier when the kids don't outnumber the laps.

2009-07-23T12:37:00.000-07:00

There he sits. We've been staring at him an awful lot. Now he's asking for his iphone, laptop, and briefcase. He was complaining of itching (either from the chest shave or the epidural) and Fancy Nancy the Nurse gave him a vile of benedryl in his neck port. He was snoring about 3 minutes later, so us girls hopped over to the Catina Larado for gigantic margaritas and guacamole. How often to you get lunch with your mama and sister on a Thursday?

Fancy Nancy recommended that Dad take three walks a day. She said next time she won't even need to go with him. I don't know what she would have done if Dad had gone down, but she felt useful.
More later. E

2009-07-23T09:37:00.000-07:00

Dad just ROSE UP! out the bed and went for a walk down the hall. He tagged both ends of the hall and sat back down. I'll post pics when I have my computer.

2009-07-22T19:58:00.001-07:00

Just went to see the One Kidney Wonder. He's still a bit in and out on his good drugs, but he was able to confirm that "righty is back to normal." He is real real thirsty and they'll only give him ice chips. We said goodnight, and we'll check on him tomorrow.

2009-07-22T15:03:00.000-07:00

Alright. We've got mama back on the porch. She is resting assured that Dad is in good hands. He's at CVSU (Cardiovascular Surgical Unit)at St. Vincent. We left him snoring and the nurse (Lori) said that he would probably be snoring the rest of the day and night. We took our opportunity to get Mama home for a little rest.
The manna of food in this house is IMPRESSIVE! Since I've stepped foot in the door, I have had chips with this yummy bean salsa, and some apple pie. That's an excellent combo.
So back to the man of the hour. He had a tube sucking the contents of his stomach out, apparently to counteract the nausea of the anesthesia, coming from his nose, which Lori the Nurse said he had been complaining about since he regained consciousness. He had an arterial blood pressure thing in, and a little splint to keep that in. He had a nasal canula in his nose. He had some sort of heater on his bed to warm him up. He was swiped in benadine. He sounded just like Pops(Dad's dad)when he grumbled about his nose tube. Pops was not a grumbler, he was a gentle man indeed, just the tone of his voice came through. So that's all I saw... he had a sheet pulled up to his neck. Joe went by a bit ago and said that he was still snoring. Now I'm going to eat some chicken and rice something that rachy and mom are noshing on. Smells excellent.

2009-07-22T12:39:00.000-07:00

One Kidney Wonder says " I feel like crap and I don't know jack shit" and "get somebody to get this crap out of my nose.". Mom assured him that his liver was gone. He looked at her funny, then told her "nice shirt."

2009-07-22T11:28:00.000-07:00

Dr. Langford came out and said they're sewing him up. Said everything went as planned, thrombus came out easily. Said there was bleeding around the site of the thrombus, which they were prepared for. They gave him "cell saver" which is I think catching the blood that falls outta ya and processing it and sticking it back in. Said he has an lateral incision of around 8 inches. Ok, now Dr Meadors just came out. He's stable. I assume dr meadors is stable too, but i was referencing dad. He will stay in CVICU tonight. Again reported that there was lots of bleeding, that there were lots of auxillary blood vessels that had grown, but they got "most of it back in him." Mom will probably get to go back in 45 mins or so. Overall, dr measors said he thought the overall result was good.

2009-07-22T10:43:00.000-07:00

I was going to post a picture of the waiting game. I think we're the loud people. Mom's crackin jokes, and they're actually funny. This iPhone fails me, and I can't get a picture in. We've had no updates.

Progress

2009-07-22T10:23:00.000-07:00

They started at 11:45. Now we have 2.5 hours to wait. Oh, and Joe found his bananna.

Here we sit...

2009-07-22T09:32:00.000-07:00

We're all camped out in the surgical waiting room. Naturally, things have gotten off to a slow start. Reminds me of a song we used to sing when we went camping with Scouts. "Here we sit like ticks on a toilet seat...." but I digress. As we've been throughout this process, we're surrounded by family and friends.

We'll post more as we know more.

Give Blood

2009-07-21T20:10:00.000-07:00

As you have read, I'm a worrier. I could recite a litany of Things-That-Could-Happen-To-You. When the kids were teenagers, they understood that, "Don't run with scissors," was shorthand for that list. They had been drilled. Bryan says he won't have to worry because I will.

I do see the rainbows, though. We have been abundantly blessed in our family. We are surrounded by children, their amazing spouses, and our precious grandchildren. Our circle of family and friends is wide and loving.

I absolutely believe that everything is going to be ok. The surgery is just a procedure. The recovery will not be more remarkable than many other surgeries that we all have had. (The Goads have recommended that we record Bryan's babbling when he's coming out of anesthesia. That will be fun.) We also want everyone to know that we don't think we're the only family with something Really Bad happening. But we do thank you all for all your letters and emails and calls.

Many of you have said that you would do ANYTHING to help us. Today the nurse told us that Bryan would probably need two units of blood. We tend to take that blood supply for granted. There is no reason or time for us to ask for specific donations of blood for Bryan, but we know that giving blood or platelets is a life-saving gift that is relatively easy to do. (They give you cookies when it's over!) So--if you're in the cadre of folks who meet the criteria and don't have a vaso-vagal reaction (faint, like I nearly did) then please consider going to your local Red Cross or hospital and donating a pint. You'll be saving somebody's life.

Today the nurse who shepherded us through the admission process took us to the hospital pharmacy for Bryan's pre-op meds. One of them was a single aspirin. On the way home Bryan wondered what we had paid for it. I pulled out the receipt. Zero. No charge. Good sign. We also saw a rainbow. But, as Karen told Erin before their wedding when she wondered about seeing Shaun before the ceremony: We're not superstitious, we're religious. See everyone later. Love you all.

Get it Gone, Gone, Gone

2009-07-21T19:44:00.000-07:00

Hey, That desk was my Daddy's desk and it hasn't been that clean since I moved it into my office. Just ask "the Carrot" how much gnashing of teeth was required for me to finally get everything put away.

Well, the Keeper of the Rotten Kidney is just about to turn that duty over to someone else...maybe a big ol' red hazardous medical waste bag or something. I kinda wonder if I'd like to see it, but it's probably yuck!! I'm not on drugs yet and I thought last night that maybe I'd like to be awake so I could see what was going on...hell, I can't even get stuff out of my own eye. The kidney was a good one and I wonder what will fill the hole that will be left. Maybe they could shove a little of my belly over in the gap and then my 6-pack would show through. I still have one under there I'm sure. (glass half full)

It has been an amazingly long time since this thing was discovered and also an amazingly short time to get ready to get the surgery done.

Family and friends and friends-of-friends, seen and unseen, known and unknown, have responded to my news and have lifted us up emotionally and spiritually. I am grateful for that support. I may even mumble some of your names under the influence of anesthesia. I'll keep all the secrets.

We will get this thing done in the morning and the Docs can have a late lunch. I guess I'll get jello and steamed carrots for awhile. Maybe somebody will smuggle in a Diet Coke and some Key Lime Pie.

Maybe I'll get some new shirts. I do have some new Hawaiian flowerdy shirts ready for my hospital attire. There is not a red one in the bunch. Surely this crazy family of mine will post some pics of ME.... it's all about me. :D lovin' it !!!!!

I've enjoyed seeing my kids' personalities on parade. It's amazing that they are permutations of the combination of us.

I'll blog again on the post side of the surgery. Looks like I'll be laid up with nothin' to do for awhile. My personal e-mail is greatspeckledbyrd@gmail.com. I'll write back as meds permit.
Some of those might be interesting.

up short KORK
soon to be just plain ol Purple Hulls again

2009-07-21T16:08:00.000-07:00

Nothin' like a little organ removal to light a fire under ya!... Dad's desk is clean. I'm wondering how full the drawers are... but the desk is clean!

Also note his fake look of agony and holding of his right flank... is he even grabbing the right side? He does that when he wants something. It works like a charm.

Welp, we're at T-14 hours. Dad reports to St. Vincent's Organ Removal Department at 8AM. We hope everything is where it is supposed to be. We hope the surgeons have a good breakfast. Mom was talking the other day about the "Heirarchy of Horrible Things that Can Happen." We wonder why she can't sleep?! While horrible, disgusting, vile and full of uncertainty, I'm hoping to learn something during or after this is all over. Not the surgery so much as the journey. Maybe I'll be thankful for it someday, in some regard.

I'll keep you posted about tomorrow.
E

2009-07-20T09:24:00.000-07:00

Our friend Chuck Dorion (we say it Du waa waa) was in Mom's 6th grade class way back when... then he and Rach went to High School together. He's a grown up now and does scary stuff like defending us and our own from bad guys... from the seat of his very own Black Hawk!! As my mama asked, he compares our upcoming battle with his deployment.
Chuck- you fly Black Hawks in wars and stuff, but you're real bravery is posting literary prose for Debbie Byrd to critique! She loved your email and asked me to post- which means you passed the English teachers' test! I don't sometimes, but I'm bigger than her now. Thanks, Chuck.

i wasn't sure if i was supposed to email you, or leave a blog entry (thinking thats just for the fam)

but here goes....

in the next few lines, i'll briefly describe MY experiences going through the deployment process. when i compare the deployment to the rotten kidney, i am speaking only from what i have heard from the blog as to what KORK and the KORK KREW (i kinda like that name for you all) have gone through. here goes nothin!

-- our WARNO (Warning Order) comes in. now i hate to compare this to the...well, as erin put it..."nether regions" symptom, but its our "heads up, somthings coming" letter we get.

-- then there is the actual Deployment Order. this is the point at which he family does most of the worrying! my thoughts...ok, lets get this thing done (kinda sounds like KORK doesn't it). from what i hear, this is the part where you all knew something was up, and now you know for sure.

-- time to prep! while im being "guided" by my family to get this, that, and the other thing (paperwork) done, i'm more interested in doing the things i love. flying, fishing, having a drink with friends. sorry KORK, no banjo for me! in this mode, you're not really trying to forget the upcoming "adventure" just living in the moment. however, the love and support from family and friends is always welcomed! this is the part i LOVE reading about on the blog...KORK playing the banjo and driving the drop-top, and mamma byrd google-ing everything about the soon to be ex-kidney!

-- the go-to-war part. not the part anyone really wants to talk about. but from a deployment view....yes, we all think about the bad. yes, we are all scared at some point. but that is where the support group comes into play. for me, it was the family and friends i had back home....oh and i can't forget about mamma byrd and rach threatening to write my commander and tell him i wasn't "allowed" to go on this trip! that still makes me smile! some people might wonder why KORK isn't worried. its probably the same reason why a lot of soldiers "arent worried"....we have plenty of other people doing that for us. that is the stage i think you all are in right now. KORK is playing his banjo, just waiting to jump this last hurdle that is keeping him from the beach!

as i read the blog, i laugh! its great getting to hear everyone's point of view. but the one thing that jumps out of every single one, is KORK's courage. The smiling pictures, the constant joking, and no fear! With his attitude towards life, i know for a fact, that if the army special forces had tile guys, he'd be the one they picked first!

i know my "few" lines i mentioned earlier has now turned into many. but as i write i can't help but think that these two events are a lot alike. well except one thing...erin said the kidney doesn't stink....iraq does! one last note:

the best definition of courage that i have found is this..."Courage is ones ability to accept and overcome fear!" Sounds like KORK to me!

oh and if you don't want to accept any of this, and would rather crunch some numbers....the way i see it, ya'll have 9 good kidneys vs. 1 misfit kidney! you do the math!

p.s. thats just the numbers in your household. you've got 2 more right here ready to fight!

Chuck (or Charles, but only for you carrot)

Forgetfulness

2009-07-17T11:39:00.000-07:00

I just look normal, or as normal as I've ever been, but I'm finding myself in a bit of a fog occasionally.

When I referred to our friends who have deployed, how could I have left off our dear friend, Lt. Colonel Mark David Henry? Not because we don't love him, but because my rememberer is defective. Of course, he'll tell you that we also forgot his picnic, but I'm going to blame that on Bryan. He got involved in weekend chores, and we looked up to see Joe who wondered if we were ok. I felt horrible! So, David, here's my apology for those times and any others that I don't even know about because I don't remember! We love you and your whole family.

Somebody call and remind me of anything important, like eating.

BTW I haven't heard from any of you formerly-deployed folks. I either got it right or am so far off the mark that you can't even start to explain. Oh well. My metaphors have been goofy too.

2009-07-16T20:11:00.000-07:00

Whew! Thanks for getting back to your old authentic selves, ya'll. I must admit that all the politeness between yourselves was a little disconcerting while I was home. I was waiting for a "HHHHHHHhhhhhh(audible exhale) BRY-in!!" to make me know that everything was ok, and I never heard it.
Here's to authenticity! Now go get my Dad a Diet Coke.

No really- All we've ever learned about how to be married is from these two fools. They've taught us well. I hope Shaun still likes me as much as Dad likes Mom 36? How old is Sam? I'll be 32... so he's 34?? So y'all are 37? Eh hmmm. I hope Shaun still likes me as much as Dad likes Mom 37 years from now. They're best friends.

I can only quote from kids' movies these days...

Mater: "I knew .. I knowed I made a good choice"
Lighting McQueen: About what?
Mater: "My best friend"

Carpe Diem

2009-07-15T19:05:00.000-07:00

After receiving the diagnosis (finally, after over a week of tests and consultations) we went through a period of shock. We were surrounded by family and friends who distracted, laughed, cried, empathized, and fed us. We took on an aura of uber-politeness and -carefulness. Then we began this waiting. KORK would have gone to the hospital immediately as if cutting out the offending body parts would set the world right again. Carrot, as you have read, imagined that the surgery would be the dividing point on the time line: Before and After.

We have merged our points of view, in a way. Bryan has been getting his work organized so that other folks can keep it going. He spent the afternoon Monday with Gertie, his mom, letting her see him unchanged and happy. tonight he went to play music (banjo) with the Nobodies because "this might be the last time I can go for a while." I have stepped back from the nightmares of What-if (kind of). Neither of us could sustain the tip-toeing around any more.

Maybe this is what military folks do before they deploy. (Barett, Jesse, Chuck, JB, you'll have to give me feedback on this.) You get ready. Get all your business in order. Visit friends and family. Make sure other people are taken care of.

Then have a party, remodel the house, start another courthouse tile restoration project, go to the beach, teach the kids to swim, plant a tree, and be thankful for every single friend and every single day.

We love you all,

Debbie (aka Carrot)

From the Keeper of the Rotten Kidney

2009-07-14T18:56:00.000-07:00

As my granddaughter,Emily, would say... "hey you guys" this is the KORK. I'm the guy with the Kidney that is out of control. Erin (Erv) started this and everybody in the immediate family has written and, low and behold, my firstborn finally wrote and threw down the gauntlet and said it was time to hear from me. I know they're all worried about me because after all, I have been pegged as the pea....surrounded by my pod...and apparently y'all are wondering. I thought they could read me like a book...all the way to the red ears.

By the way...if indeed I am the peas, I choose to be purple hulls. They're sweet and earthy and go great with cornbread and butter.

First and foremost, thank y'all for your prayers and concerns for me and for my family. I will use every prayer and pass them along to folks who also need our prayers and thoughts.

I've had this Right Kidney for a long time....approaching 6 decades and it has worked fine....and may actually still be working.... I don't know the answer to that, but it's coming out. They tell me that it's time to give it up...and so I shall, with gratitude for its service. I would say that I am lucky. I have a spare already installed and up to speed. They won't have to whittle on an organ, and bombard it with chemicals and radiation so that I have some hope of continuing on. They'll just take it out.... I'm extremely lucky.

This happened as such a surprise. I suppose lots of dianoses are surprises, but I have no symptoms. I feel good, I'm middle aged plus, but I wouldn't guess that there is anything wrong with me and I do actually pay attention most of the time.

Debbie says I need to find a different way to say it, but, here is how I feel about the problem of cancer. I have a great respect for it and how it is stealthy and how it has so many forms, but I am not afraid of it. In the past week, I have talked to lots of people who have been through many forms of the disease and they are survivors. I plan to join their ranks. In general it changed how they look at life. You know, the older we get, the more our perspective changes..so I'm assuming that there are lots more roses to be smelled.

There is a big unknown out there as it relates to how my treatment will be specific to me. We are blessed with good doctors and I'll rely on them to figure out what is best. I'll help them all I can. I'll deal with that as it comes because I do not have a personal benchmark for a deal like this.

My understanding is that the surgery will be similar to a C-section. David Eifling said "sounds like a K-section"... so I'll borrow that phrase and use that as a way to get through the surgery. It's been done before so surely I can get through it too.

I'm one week away from surgery...let's get on with it. I'm not used to waiting. I have a few more details to get in place so that ART operates smoothly. I guess it took a Rotten Kidney to get me to spread out some of the details of my business. I have a great crew.... they'll do great.

Ok, so there you have it

KORK....soon to be OKW ( one kidney wonder)

Bubba's turn

2009-07-11T19:13:00.000-07:00

Bubba, yup, that's what my sisters refer to me as. Not sure how I got the nickname, but it stuck, anyway. Guess it's my turn to put something out here. It's been an interesting two weeks, wow, is that really all it's been? It's amazing the outpouring of support from friends far and wide when your family runs into something like this.

As Erin has related in her posts dad, aka KORK, has been stoically optimistic through all of this. We went out to enjoy the pool today and as was related by mom, aka carrot, in an email earlier he's treating each day as just another day. He gets more done on a Saturday than most of us get done in a week. Today was spent dealing with the new laundry room, the backed up A/C drain, etc. Just another day, ready to put this behind him and move on.

Mom is being her usual pessimist, we've really got to get her off the Internet (quit reading everything you can find mom it'll just make you more nervous). I know, I know, you just wanna know what to expect.

Anyway, we're charging ahead, looking forward to Byrd Beach Trip 2009, with all present and accounted for, minus one borked kidney. Those who haven't seen him upright and treating life as normal can trust that he's still vertical and keeping on keeping on.

OK dad, we've all posted but you. Time to get the scoop straight from KORK himself.

Sam

2009-07-10T17:14:00.000-07:00

Nothing Kidney-related to report today. I suspect it's still rotten. What I have to report today is philosophical and religous in nature. Spiritual, perhaps. Raised in a religiously liberal home, we were never told that one was right and one was wrong. Never told that if you're good you're heaven bound and bad you're screwed to the depths of hell. If you were vain enough to ask if your Sundy Shoes looked alright, then you were reminded... "oh Honey, God doesn't care, get in the car." We had to tell Rachy the arc story a couple of years ago- Bible trivia has never been our forte.
So, whatever we call him, Yaweh, God, Allah, "Sky Guy" (my 3 year old), must be the one keeping me so calm. Perhaps its all the prayers going around, and as BEB says, (y'all know his middle name is Earl, right?) Earl. That's a funny middle name, isn't it? I've always thought so. Ahem... sorry.. As BEB has said "Isn't it amazing that God never gets too many."

Keep 'em coming.
EABO

2009-07-09T19:57:00.001-07:00

A bit of information...

Moo and Poo went to see Dr. Meadors today. They were both impressed with his bedside manner and delivery of info. Dr. Meadors said that he has seen three of these tumors in the last two weeks. Odd. Check your kidneys, Little Rock. Anyway, he said that Dad's thrombus is low in the vena cava, which is good, and that he could see the beginning and the end of it, which is also good. The plan is to cut that sucker out on July 22nd, at 10am. He will cut from right below his rib cage, to God knows where, but that he shouldn't need to "break his ribcage" (bonus!), unless he needs to go higher. He will prep Dad's chest anyway, just in case he needs to go higher during the surgery. Surgery will take about 2.5 hours (sometimes I can't get two children fed and bathed in that time, but, I guess these guys are THAT good),and expected stay in the hospital is a week. Mom said that they have a nice new add-on to St. Vincent where he'll have lots of windows in his room or something like that. Visiting will be pretty tight as long as he is in ICU status right after surgery, but once he's in step-down we'll all be able to go in and gawk at him in his hospital gown.
Even though trivial to the outsider, they did ask about the.. um... I think like the 23rd? Annual Byrd Pilgramidge to the Gulf of Mexico to Sit There and Do Nothing Except Eat Oreos and Drink Wine and Get Real Hot then Go Cool Off. It's what we do. We're slated for Aug 1-8, and we really need to go. We don't miss. We have perfect attendence.
The nurse said that he could ride to the beach, but he can't get his incisions wet until his scabs fall off (throw up in my mouth), so we'll just have to give him wet wash cloths to put on his forehead and stuff. Anyway... if Dad's feeling like it, we're still going to the beach.
They (the medical community) still isn't very concerned with the lungs. My optimistic father thinks this is because there's nothing to worry about. My pessimistic mother thinks this is because there's lots to worry about. We'll see.

More as I recieve it,
E

2009-07-09T09:59:00.000-07:00

Sisterbaby's turn! I have a new goal in life - be optimistic like Dad. I am so so glad I went to LR last weekend to turn my frown upside down. How can someone who has just been told they have the big C be so happy? Well, that's just what I have to learn. Life's not that bad.

Realizations that I've had recently:

1. I am completely in the middle (although I'm the baby) of Sam and Erin's personality. Good with computers with a little funny sometimes. I didn't "get" the joke about Erin's Christianity box until she explained to me that Dad had said "JEW-ry" box. Jew - get it?

2. If Dad needs a kidney transplant he will most likely get one from Erin since they have the same knees and personality. If Mom every needs ANYTHING - I think they can just clone anything I've got.

3. I know more about the tile business than I thought.

Some pics from the wedding ...

Love you all,

Rach (Sisterbaby)

Mom - don't even think about editing this. :)

2009-07-09T09:42:00.001-07:00

He carries the Rotten Kidney with much style.

2009-07-08T17:56:00.000-07:00

I was going to post another pre-op picture of KORK today. Mom sent one of him wading through paper on his desk, and he was in a red shirt again. I'm waiting until he presents with a little variety in his wardrobe. Maybe he's decided "the hell with changing clothes!" Who knows.
Most of you know that I'm married to a lovely member of Uncle Sam's Tax Squad. KORK asked him today if donation of a slightly bulbous kidney was deductible. Bwa ha ha ha ha ha.... humor is genetic too. I remember the exact day that I knew Dad thought I was funny. We were in Sears, it was the late 80s. Dad was wearing a red shirt- no really.. he was! We were in that section where they put all the extra lotion and crap they try to sell you on the way to the mowers... anyway... Dad said "ooooh, look at all those jew-ry boxes!" and I said "oooooh, where could I find a christianity box?!" then he snorted and told me I was funny.
Definining moment. Been workin' on being funny ever since.
There has been no medical news today. Appointment Thursday at 1:30 with Dr. Meadors. I hope he's the biggest cardiovascular nerd they've ever met, or that Christina Yang walks through the door.

2009-07-07T12:50:00.000-07:00

We (the children), don't drop everything and make trips to Little Rock. We just don't. We all have kids, new marriages, jobs, lives... all things we know Mom and Dad are very proud of. But I must say, despite the dire circumstance that we arrived under, not that it has gone away, I personally had a very nice time. A hang out in the living room for no reason very nice time. We usually only do that on alternating Thanksgivings and Christmases, with more than one place to be, with things we're supposed to do and say and sing and eat.
We should remember to do that more often. I feel exponentially better about our future after being there these three days. I think I expected Dad to be writhing in pain with one eyeball hanging from wires, gasping for breath like a floppy fish.

Here's PawPaw and his fan-club...Elliot was the closest to the fish outta water.

E