Time for a new drug?

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....

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

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

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

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!

He's strong.

Look For Cardinals and Live Like Bryan

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

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

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

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...

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...

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!

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

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

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?

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

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

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 !!!!

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

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.