Navel Gazing

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

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

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

.... 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

Back to Normal

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...

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

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

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.