SIGNIFICANCE

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 

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

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.

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.

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

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

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)

I need more hours in my days!

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

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?

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.