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