Sunday, June 20, 2010

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.

Saturday, June 5, 2010

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
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,