Thursday, December 31, 2009

Goodbye 2009

January: Elliot Martin Oliver arrived during the ice storm of the century in Fayetteville. By some fluke of engineering, our hotel had power, so we took Ethan back with us. He's convinced to this day that we lost his LSU football uniform pants there. So, Nana replaced them. Now Erin has TWO LSU helmets to store. Surely, Elliot will have a phase when he will wear one to humor his Daddy.

February: We continued our house remodeling project. Painting morphed into new window and door trim and starting the screened porch addition. I loved waking up to see a yard full of pickup trucks. All I had to do was make a request and these guys said, "Yes, ma'am."

March: Bryan first noticed the swelling in his parts. We spent Spring Break in Fayetteville, helping with bridal pictures and grandbabies. Erin and I took Elliot along to the photo shoot with Rachel. He was a trooper. The photo shoot had been delayed because of weather, so when we got to Fort Smith to meet the photographer, there was no place to change into her gown. Shannon marched across the street to the funeral home, asked if we could use a room, and led us in! Erin and I were panicked that mourners would encounter the beautiful bride in the hallway, but there was no confrontation.

April: The house project continued quickly. After 27 years of glacial-speed progress, having all these workers here was quite a change for us. We had carpenters, granite fabricators, tile layers (thanks, Keith!), roofers, electricians. . . . and we had a wedding about to happen!

May: The weather threatened, and we rented every tent in Fayetteville, but the wedding was beautiful! Wearing blue rainboots, Rachel avoided the puddles, and the ceremony happened as planned in the Botanical Gardens of the Ozarks. The nephews and niece made it down the aisle and the bridesmaids avoided hypothermia with their lovely pashminas. Then we had a great party. Congratulations, Mr. and Mrs. Silvestri! We celebrated Emily's third birthday. She loves Fancy Nancy books, Legos, and baby dolls. As much as she loves to read, she loves to talk.

June: Bryan and I went to Malibu to visit with Bob Harris of Malibu Ceramics. He and Bryan collaborate on a lot of projects since their talents complement each other. We stayed in a beautiful house on a mountain overlooking the ocean. It was then that we realized that a visit to the urologist was necessary to figure out what was going on.

July: We had a houseful. The Sutcliffes were here. All the kids were here. Peggy was here. Daddy was here. Others were waiting at home to hear. After the diagnosis of stage-four renal cell carcinoma, the brain scan was next. We held our collective breath and together sighed our prayers of thanks when it showed no mets. "We knew there wasn't anything in your brain!" Then waiting for surgery was hard. Knowing that a cancer is growing inside you is frightening; to have to wait so long to get it out gave us a sense of helplessness. However, we had met the surgical doctors on the team and were confident in their plans. July 22: radical nephrectomy followed by several days in the hospital. What a supportive, competent group of nurses and doctors we had at St. Vincent's. They took care of us and smiled at our beach-themed visitors. We met our oncologist, Dr. Baltz, and immediately felt safe and optimistic in his care.

August: We actually went to the beach. Dr. Baltz understood our family's crazy need to complete our annual trek. He approved the delay in Bryan's blood tests by prescribing daily heparin injections. The grandkids understood their parents' explicit instructions to NOT use Pawpaw as a trampoline. I even got a new car for the safe transport of the patient. I had expected to need to drug him up for the trip, but he did fine, even walking into rest stops and restaurants. The beach house had two living areas. In past years, we have made ourselves available to the kids, focusing on each one in turn. This time, Bryan napped and I found quiet places to reflect and rest. Just being together was healing. Elliot contracted foot and mouth syndrome (disease?) and was a mess. His mouth hurt so nothing was soothing. Bless his heart. He was better by the time they flew back to NWA. The other kids loved the pool and the sand. They love to be together.

September: Back to school and the self-centered world of middle school kids. All my colleagues have been tremendously supportive and helpful. Teaching is a monumental task. There's not really a break from it. No substitute takes over the tasks. The planning, responsibility for instruction, assessment, interaction with parents, care of students doesn't abate whether the teacher is on deck or not. It's a heavy load to carry along with a heavy personal load. I know many teachers carry that load, and I hope to understand it in others and help when I can. I try not to whine.

October: We love those Hogs! We were able to attend all the football games both here and in Fayetteville. Rachel and Matt organized great tailgating in The Gardens. We usually rode the shuttle bus up the hill. One of Bryan's side effects has been tender feet. We even went to Dallas to the new Cowboy Stadium to see the Hogs play Texas A&M. David Sutcliffe and his wife, Jenn, are A&M alums, so it was fun to visit with them and their baby, Anthony, before the game. Rachel and Matt met us and took us to the game. David's folks, Gail and Vic, retrieved us from the game so we didn't have to negotiate Dallas traffic.

November: Thanksgiving is usually at our house. We love it. Cheryl Dawn, Peggy, and I usually make dressing by the vat. Tables everywhere. Enough food to make us all feel stuffed, drowsy, and very grateful. But, this year, Sam and Alicia were going to KC, Erin and Shaun were going to Shreveport, and Rachel and Matt were packing in preparation to moving. We had many invitations from all of our friends. We decided to go to the Henry house where we had a wonderful meal, a soft couch for watching football, and a very-welcomed respite from our busy lives. I actually made a normal -sized dish of dressing that was pretty good. We were disappointed that LSU beat the Hogs in overtime the next day. Ethan had to be convinced that his team really lost. He was in Tiger country and was influenced to defect. The best news came on the 30th, though, when Bryan had his latest set of scans. Whole body, top to bottom (thanks NovaSys) NO NEW METS!! and the mets in his lungs are shrinking! Bryan used his famous math skills to calculate the volume of the largest based on the numbers from his previous scans to figure a 79% reduction in size. Dr. Baltz told us that it was nothing short of a miracle. Keep those prayers coming folks!

December: Birthdays! Eli turned seven on the 2nd. He chose El Porton for the birthday dinner. When he was two, he loved that place. He called it "Tone" and would eat cheese dip with a spoon. He is much more refined now. His friends' party was a Lego party at his house. Alicia made a great cake that looked like Legos, of course. He's enjoying first grade at Williams Magnet School and is a Tiger Cub. His Daddy is, of course, the den leader. Ethan turned four on the 8th. He had a friends' party at "Chucka" Cheese that we missed. It was on a Tuesday! Ethan is now on the Mighty Mites' hockey team and actually ice skates. Matt's birthday was the next day. We made it to Fayetteville over the weekend to see their new house. We have guest quarters! We realized that the perfect gift for him was a sky hook, but since those don't exist, we found a great ladder that is alternately an extension ladder or a step ladder. The smoke detector in their living room is at 20 feet! We continued through the fullness of Advent, getting busier and busier. Gertie came down for a short visit. We appreciate the folks who carry her down. She needs to see her boy regularly. This isn't something a mama should have to endure. On Christmas Eve, Sam and family, got out to the house around 3:00. Daddy was already here. We had planned to be here with them until Christmas afternoon and then head up to NWA to see the other kids. The weather was coming at us, though! Sam and Alicia and kids were heading to Germany on the 26th, and they didn't want us to get stuck here, so they said Go Now to beat the snow. We quickly threw clothes, gifts, food, etc. into the truck and took off around 5:00. The precipitation was liquid until we got onto I-540 when it turned into blowing snow. It did get slick, but we made it to the Silvestri abode by 9:00. They welcomed all of us, even sleeping on their couch so we older folks all had beds. Cheryl Dawn and Marty made it down from Bella Vista to get Papa the next day. We had our usual rollicking Christmas dinner complete with crackers (silly hats, jokes, and toys) and a delicious dinner. Ethan is into Jesus and the wonders of his birth and reality. We elders are kept on our toes, answering all his questions.

We celebrated our 37th wedding anniversary yesterday with dinner and a basketball game. Tonight, we've watched more football and other New Year's Eve television. How blessed we are to be here, together. Life is about as normal as we could ask. We look forward to 2010 with optimism and hope. We continue to plan new projects and new trips. As we said when this diagnosis was presented to us: What do you do when told you have cancer? You live!

Friday, December 25, 2009

Christmas Season '09

Well, it's been awhile. Things are still dull and going well.
What a year it has been. (or at least half a year) .
I just started round 4 of the Sutent, so we've completed 18 weeks so far, and 5 months since surgery.
Had a doctors appointment today. This was a normal appointment with bloodwork and some face to face time with the Cancer Warrior. Blood work was normal or ok for the situation except
that the blood is super thin at the moment. He adjusted the coumadin for a couple of days to
get it back where he wants it. We'll check it again in a week. I don't feel bad. I couldn't tell that something was out of adjustment.


We had Christmas all over the place this year. Years ago, we were determined that our kids would wake up in their own beds on Christmas morning. Well, dang !!! They were paying attention and now they want the same thing for their kids...and so we travel. We had a shortened Christmas eve time with Sam, Alicia, Eli and Emily. Our plan was to also be with them on Christmas morning, but at their urging because of the eminent snowstorm, we went on to Fayetteville on Christmas eve night. Stayed with Rachel and Matt (they don't have any little ones yet, Rigby the puppy doesn't count).


Carrot's Version:
Dull? What does chemo do to your perspective?


After receiving the news that OKW's scans were "nothing short of a miracle," we settled into celebrating Advent and Christmas. We got a real tree instead of going through the intense work of putting up the nine-foot artificial tree. We met Eli and Emily at the tree farm to choose and cut our tree. They had already chosen, cut, and loaded theirs by the time we got there.
I took off the last day of school before the holiday to avoid the three-hour holiday talent show and movie for 300 sixth graders. I had a wonderfully calm, quiet day to begin my vacation. Of course, I have 200 essays to grade before I go back, but that's the price of that quiet day.


Daddy came to our house on Wednesday for the duration. On Christmas Eve we had all eyes on the weather. With the snow storm looming, Sam and Alicia encouraged us to get ourselves in the car to get to Fayetteville before the road got slick. So, in an hour, we tossed gifts, clothes, food, Daddy, and ourselves into the truck and headed north. The snow hit soon after we got onto 540 and made that leg of the trip really exciting. We arrived at Rachel and Matt's house safely but unwilling to go any farther to find more beds. Rachel and Matt ended up giving us their bed and sleeping on the couch. On Christmas morning Cheryl Dawn and Marty made it down to retrieve Daddy and headed back to Bella Vista. We had a wonderful dinner of veal and crab-macaroni and cheese and enjoyed our silly crackers with hats, jokes, and toys. Sam's family negotiated the airlines successfully after a nearly three-hour sit on the tarmac in Atlanta. They're in Germany now with Alicia's folks touring the snowy old world.


I helped Rachel unload the boxes in her office. Matt painted stuff using his new 22-foot ladder. Who puts a smoke detector that high? This morning I rode back to Little Rock with Erin and her boys. Ethan sang every word to "Do You Hear What I Hear?" over and over. Elliot is perfecting the back-arching screech to protest any denial of his mobility. PawPaw is installing a gate on the stairs as we speak.
On Wednesday, we'll celebrate 37 years of wedded bliss. What a journey. From U of A students in 1972 to the joys of grandparenthood today, it's been a blessing to be best friends and in love.
On January 6, Bryan will turn 59. We hope his 60th year is as exciting as this one. Dull? I don't think so.

Erin's perspective:
Blah blah blah blah blah blah blah blah. I sat in that oncologist's office today... it was ridiculous. I was looking to meet the Mysterious Dr. Baltz, but I didn't have the chance. Seriously folks... a line as long as St. Peter's, waiting for your name to be called. This guy must be good.
I had dinner and drinks with my dearest friend Amy this evening. She was worried about Dad. I told her (and she is well versed in seeing thru any facades or shenanigans I may pull) that he was fine. He has white eyebrows, but he's working full days, and doing his thing, and that for right now, he was just fine. She bought it , so I will too. Her major concern was that Mom had not booked the beach house for next summer. She knows us, and knows that booking the beach house is as regular as fixin' breakfast, so... her conclusion was natural. I assured her that with our latest results from scans, we were in talks of beach vacations.
There was actually a minor sibling scuffle over the parents this year for christmas. Rachy and I wanted them in Fayetteville, Sam wanted them in Little Rock. I'm sure they felt wanted and important, and I'm sure they secretly loved it. I just wanted them to open their new jerseys for next years' games in my presence.
















Oh Yes! The perfect present!
Ummmmmm, don't know what else to say. Blogging is stressful. I didn't like sitting around that Oncologist's office today with lots of people that looked sick. Dad doesn't look sick. He looks ridiculous with his white eyebrows, but most people would assume he had an unfortunate pigmentation condition, not the dreaded Big C.
Next, the Birthday Party. We've always shafted Dad's B-day simply for its unfortunate juxtoposition to Jesus' birthday. Too bad for him. This year, it's on.
Come one, come all, we'll have pie.
Lervy Dervy, E

Monday, December 14, 2009

Hellew there. Life has gotten busy, and I've neglected my LittleRottenBlog. Just talked to mom. She said that in their appointment with Dr. Baltz today he wheeled his little rolley stool over and said "about these scans..." Mom was ready to throw up expecting the worst, Dad was probably ready to show his spherical volume math skills, and then he said "they are nothing short of a miracle."

What a nice thing to hear at your oncologist's office! That's all the technical news I know of.

Moo and Poo came to Fayetteville and stayed with Matt and Rach. They just bought themselves a palatial mansion for the two of them and Big Rig, The Hairy Little Dog. They'll make some babies one day and fill it up... but until then... there are some apparently comfortable guest accomodations. Word on the street is that Dad slept until 10! Whaaaaaaaat?? Yeah, 10.


Here's PawPaw and Elliot. I like this picture because their eyes look the same I'll line us all up at Christmas and show the magic of genetics. How can three people have the same lookin' eyeballs?

Christmas is approaching. Lets think about this. On July 5th, I read somewhere that the average survival rate of Stage 4 RCC was 5 months. So instantly I thought, Oh, December 5th, ok, Christmas is going to be weird this year.
But its not! I still don't know what the HEYUL to get Dad, as he is THE HARDEST person to shop for... I am hosting Christmas dinner, and I thought about putting some sappy place card at Dad's spot telling him that I'm glad he is here, but then if I saw him read it, then I'd start crying, and then he'd see me crying and he'd start crying, then Rach would start in, and them Mom would catch on a little late, but she'd join in, and then Shaun and Matt would just stare at us and wonder what they've married into.... so I'm not gonna do it. Too risky.

Glad you're here, Dad. I'm not going to write it down. Maybe I am and I'm just prepping you?

Christmas approaching. Today my Ethan asked me if God was real, if Jesus was real, if we could drive to Heaven and take Jesus a present, that I told him that Jesus lived with God in Heaven and his Daddy told him that Jesus lived in his heart, so how could he be both places?, if God can fly, if God was a baby once, how long ago Jesus was a baby, if it would take a long time to get to Heaven to drop off the present and would he get to watch a movie in the car, and how did God make the Earth. He wouldn't get out of the car before I answered the last one. I felt like putting on my best Charlton Heston voice and starting in on the "ON THE FIRST DAY, GOD CREATED...." but we were late. I haven't had to answer any questions about the Holy Ghost yet. OYVEY!

So, what will I get Dad for Christmas? I actually have THE PERFECT gift. I think. It was all Shaun's idea, and I'll give him full credit.

Dad gave us the Bob Dylan sings Christmas CD. So, get your Bob Dylan voice in your head .... and

Fawl.... on ya knees..... and hear..... the angel voices....

Glad you're here Dad. EAT IT, STATISTICAL DATA!

Erv

Wednesday, December 2, 2009

Shar-pei Syndrome


Hi all,

You know that Chinese dog the Shar-pei; a bundle of wrinkles with a sweet dog inside.

That's how I looked this morning. I'm in an off week and for some reason retain water.

I had so much water this morning that my eyelids were bulging and partially blocking my view of the world. This is how I felt this morning.

The Shar-pei was the first thing I though of. Maybe I'll soon join old Asian royalty.
Tonight I'm back to about a normal 58 year old face....I'll take it.

We got the scan data today. Incredible !

The largest nodule in my lungs has decreased from 2.3X2.1 cm. to 1.3X1.3 cm. If I assume that the thing is somewhat spherical, then the volume has gone from 5.54 cubic centimeters to 1.47 cubic centimeters. Folks, thats a decrease of almost 75%. The other three had decreased slightly or were deemed stable. This Sutent is working.
The brain scan only had one notation....unremarkable. Hmmm how can that be? I can calculate the volume of a sphere; that's remarkable in and of itself. I am happy to have an unremarkable brain scan.

The other CT scans of the abdomen and pelvis also showed nothing that would be considered to
be mets. Essentially no change from the August 27 scan. And they did note that the right kidney was gone, gone, gone.

I was also injected with radioactive stuff and then given a bone scan from skull to ankles. There was nothing noted except that maybe my right knee was wearing out before my left knee.

I feel extremely relieved. You never know if the right drug has been prescribed. Apparently we started with the right one. Dr. Baltz is still my hero. He's quite a warrior. He did appoint Debbie to be the "boss". So she must be doing a good job too. We've made it this far. Although
I don't stress much, there is notable relief in the air the last couple of days.

Eli turned 7 today. I had lunch with him at school then we went with Sam and Alicia to Eli's choice for dinner at El Porton. Cheese dip and tacos YUMMY! Then we went to their house for birthday cake. Alicia and Emily made a "robot" cake. We've had a good day.

This weekend we're going to Fayetteville to stay all night in Rachel and Matt's new house. You know of course OKW can't move furniture hehe.

Erin, Shaun, Ethan and Elliot were here right before Thanksgiving; passing through on their way to Shreveport. Ethan's birthday is Tuesday the 8th at Chucky Cheese. We'll miss that but will celebrate early with him this weekend.

Carry on y'all
Great Speckled Byrd







Sunday, November 15, 2009

Lookin Old, Feelin OK



I had an Oncologist appointment on Friday afternoon. Blood work still improving and blood pressure improving with medication. Thank goodness the blood work is still ok...therefore the food possibilities are still wide open. Or so I thought !!

After that comment last time about the width and breadth of my integumentary system (skin area) it is noted that weight is increasing. Doc said, "What's with the weight?" There seems to be a steady increase going on there too. He said something about, ". . . all gut, no butt." Soooooo , get some of it off. Get under 199.
By my interpolation of the skin-area data, that should be about 2.08 square meters. I didn't give the excuse that during my off Sutent week I retain fluid....so maybe I have an ace up my sleeve. The next appointment will be at the end of two on Sutent weeks. I think I'll make the weigh-in, but to make sure I'll step up the exercise and drop the pie and bread.

The eyebrows are white as are the lashes. I included a picture here. Geeeze I look old, but since being old is the goal of all this, I might as well look the part. Maybe the exercise and the vacation from pie will take care of those jowels.

We finished the out-of-town football game schedule this weekend. We do enjoy it, and especially seeing those out-of-town grandbabies makes it special, but I'm looking forward to being home for a while. I'm feeling good, not particularly bothered by any side effects at the moment.

I'm working every day which is mainly talking to customers and scheduling the factory. I hope this week to secure a building permit for the expansion of the factory. I want to pour concrete by early December at the latest. The building is already on order and will be delivered by about the 10th.
We're hanging in ! Life is good ! I feel the strengh of your thoughts.
Great Speckled Byrd




















Saturday, November 7, 2009

The Fast Lane



We don't seem to be slowing down any. I took a couple of personal days on Thursday and Friday. It was nice to be able to take care of errands in a more relaxed time frame. Thursday afternoon Bryan went to get Eli; they had a Home Depot date. They've been designing and planning an addition to our new deck that would include a slide, swings, etc. Eli also says that we need to find four trees around which they'll build a tree house. He's very adamant about the number. Bryan suggested that one tree might be enough support along with other lumber. No. Four trees. His other plan is to have a hinged ladder so he can raise it up into the tree house, preventing someone (little sister? little boy cousins? Nana?) from entering his space.

So, they drove up in the truck with the back open because the big box containing the Tunnel Twister slide was so huge. It took the whole afternoon to remove part of the deck rail, frame in the slide barrier, and begin to put the slide pieces together. Eli's job was to hand me sets of one bolt, two washers, and one loc nut for each of the fourteen connection points. Sorry, no pictures of that engineering feat. While we waited for Pawpaw's construction part to be done, Eli and I swept a mountain of leaves off of the deck. Kid power is amazing. We were almost late for dinner back at their house. Emily was holding court with Mary Helen and Joe, showing off her new room. She was ready to have Mary Helen start reading stacks of books.

Friday we went to Fayetteville just in time for Bryan to change clothes and head to a meeting at the Fay Jones School of Architecture. I stayed at Erin's house and played with Ethan and Elliott while she finished packing for their weekend trip to Branson. Ethan has transferred his focus from football uniforms to superheroes. He greeted us in a Batman costume and changed into several others within an hour. Rachel made a cool birthday party invitation for him that superimposed his face onto a Spiderman body. He thinks he gets Spiderman boots and gloves now. Where on earth can I find those?

My favorite sister in the whole world (Cheryl Dawn) came by for a visit. She lives up in Bella Vista. We always have trouble getting all of our catching up done with each other. We talk about Daddy a lot. We enjoy watching him enjoying life but worry too. Mama left us with that worry gene.

Friday night we had a lovely dinner with the Dean's Circle group (folks who support the Architecture School). Leslie Belden is the minister who married Rachel and Matt. She's also an architect. Her husband, Ted, and she are active in this group. Steve Kinsler is the chair of the group. He was a Scouter when Sam was in high school. Arkansas really is a small state.

Today we had fun at the game then drove home so we can have a day of recuperation from all of our fun before the new week begins. We joined the line of cars going back over the mountain. There were two choices--the slower lane was going about 60 mph and the fast lane was pushing 80 mph. Which do you think we chose?

Bryan's lifelong friend, Mike Roller, and his wife, Dianna, are coming to see us Monday and Tuesday. Their beautiful daughter has taken a week off from her medical residency in Rhode Island to come home and to make the Arkansas Bride's Pilgrimage to Lowe's Bridal Emporium in Brinkley. I've given them enough information to give them guidance without scaring them to death about weddings (I hope). My best advice is to hire Jessica the Wedding Planner. She saved us much more money than she charged, plus she took care of everything!

Today began the off-week ending his second round of Sutent. The current side effect is sore feet. He says they feel like blisters that have popped, grown new skin, and are being abraded by his socks and shoes. For that reason, we used the handicapped parking lot and rode the shuttle to and from the stadium today. I insisted. Foresight is not his forte. He told me later that I was right, of course. New scans will be scheduled for the end of November. We pray that this drug is doing its thing on his lung mets.

Between Razorback games and grandchildren's events, Bryan continues to go to work, keep his customers happy, and supervise the work on our house. While I was driving to Fayetteville, he was on the phone, arranging for gravel to be delivered and spread on our driveway. I'm tired just recapping all of our activities! I need a trip to the beach.


Monday, November 2, 2009

I Had a Loaded Baked Potato and a Diet Coke for Supper

My oh My ... we had a busy week

We had dinner with Eli and Emily on Wednesday.

Emily is a squeeler...especially when PawPaw walks into the room. At dinner she wanted to

know why PawPaw had a sick kidney. Those little ears hear it all and they deserve explanations. They learn from us constantly.


Eli is quite a writer. He has made a big list of things to get from HomeDepot. He and I will go next week and get materials and start construction of the best ever swingset/monkey bars/ playground. Photograph attached.







Another Razorback weekend in Fayetteville. Homecoming is fun, but the game was too easy. We actually left in the 4th quarter (unheard of) when we were ahead by about 50 points. I'm always amazed at how tired going to a ball game makes me. Ethan reminded me Sunday morning when he asked me to play football with him. A couple of throws, catches and soft tackles and I was ready to ride the bench for awhile. Moonpie ( Elliot ) can say DaDa and I was encouraging PawPaw but didn't get very far. He's pulling up and looks poised to take off soon.


Then we went to Mtn. Home on Sunday afternoon for the visitation and memorial service for Don Bell's mother. Although those are sad occasions that we all must attend to, they are also joyous and grounding occasions when we reconnect with our friends and families. It was great to sit with a pew full of friends who go back five plus decades. We weren't there to see each other; we were there to hold up Don and his sister Patty. It was a very nice service. The women in Mrs. Bell's Faith Group each spoke about her memories of Winifred and read favorite bible verses.

Y'all have heard all the moaning about what I was going to have to eat and live on forever and ever. Well.....you have to go way back for all of the connections in this story, but this is how things work in Arkansas. My next door neighbor growing up, Laurie Ahrens Townsend, about 5 months my senior, started first grade a year ahead of me because I was a January baby and missed the cut-off, so we were separated all the way through school, then she went off to college and became a dietitian, practiced 27 years in New England, retired and then moved back home about 5 years ago. Laurie was in a Bible study class with a classmate of mine, Julie Gustafson Williamson. Julie told Laurie about the blog and the hell-of-a-diet we were looking at, and Laurie called me and offered to review. I sent her all of the blood work data for the last two months and the diet information we had received.

Debbie and I stayed with Mom on Sunday night and Laurie came over for supper. We laughed a lot over old childhood stories, then we had a consultation about my dietary needs that made a whole lot more sense to us than what we had heard before. Maybe it's that we trust our peer group more, but with plenty of time and discussion which is sometimes missing or misunderstood in a medical setting, Laurie gave us lots of information. The new analysis... blood work indicates there are no problems with calcium, potassium, phosphorous. All current and recent past indicators of kidney function are in the normal range or explainable because of the recent surgery. Sooooo.... eat normally, but be aware of what is going into your mouth...particularly the sodium. Pay attention to the blood work...if something starts trending the wrong way, then make a change. Diet Coke....made with the purest of water...can't hurt. So now I go from a pie-with-cool whip diet to something more logical.

I was sitting in the oncologist's office waiting and I have access to my electronic charts. I learned that my integumentary system (skin ) is 2.13 sq. meters in area. WHO KNEW !!!!! That is up from 2.11 sq. meters about 6 weeks ago. I musta dozed off when they measured that...I haven't a clue. I think the 0.02 sq. meter increase must surely be from the pie diet. Does anyone else know how many square meters of skin you have?

I'm of an age where I scan the obits along with the sports page. I've noted that some folks die
after a long battle with cancer. I don't get the feeling that I'm battling cancer....I do not say that lightly, because my situation has not been what I would consider to be a hard road. I may not know what a hard road is. We are extremely fortunate to have found a warrior, Dr. Baltz, to do the battle for me. He's the warrior who encourages me and hands me this little pill about the size of a pinto bean to lob daily at the cancer cells. He knows what the Sutent is doing and isn't pulling any punches with it. My job is to keep the battleground tilted in his favor. I have great respect for the cancer, and I'm ready to have it gone.

Great Speckled Byrd

Sunday, November 1, 2009

I'm baaaaaaaaaAyck. I understand there have been requests for my return, and for this I am honored.
Quick reminder that this wee lil' blog is my perspective only. I could always be way off... I used to get the answers WAY wrong in English Lit when asked what some reading passage meant. WAY OFF. Disclaimer done.

My heaviest perspective right now is that of a parent, a mama. That perspective that we would do anything...everything... just so that one of our own doesn't have to experience a pain, a disappointment, a loss.
My darkest worry is having to explain any of this to my children, or to see a change in PawPaw affect their perception of him. Ethan told PawPaw this weekend that he was gettin' old. Now, Ethan thinks that if you have a beard you are old, so.. I don't know what tipped him off that Dad is aging, and we'll probably never know.

Back to my point... my dreadful pairing of Middle Child and Mama-Guts, all mixed about, hates that I can't take this all away from Mom, from Dad, from my sibligs, from the babies, from Granny... because I know that I would be fine.
I'm aggressive, I'm strong, I would fight it down and everything would turn out fine, 'cause I'm me... and I would feel like crap, but I'd keep doing and going, and be positive, and work, and sleep when I could, and I'd form my team, and trust them, and do what they said, and show up like I always have, and assure my family that I'm just fine. It'd just be better if it were me because I have no doubt that I could do it.
And then it hits me.... he's not glad it's him, but he IS glad it's him. Because its not his Debbie, and its not his Sam, or Erin, or Rachel, or his Alicia, or Shaun, or Matt, or Eli, or Ethan, or Emily, or Elliot.

He's glad it's him, because he knows he can do it.

Sunday, October 18, 2009

Update from the OKW


Well, at least with some side effects, you know the stuff is workin.


I'm in the off week after the first two weeks of round 2. So in engineering terms this would be

2A3.


There is not a Diet Coke here at home or in my fridge at the office. This must be kinda like

quitting smoking. I even thought about having a stash for just in case. The admonition was

to cut back, so probably the cold turkey approach is overkill. I tried the coffee in the morning

YUCK!!!!! I used to like coffee.... BUUUUUT I have taste issues going on so I'll try it again.

Diet Coke is available at all convenience stores.


The itchy scalp is back, and I have little pimples on my face like when I was 15. I can deal with that; it's just a nuisiance.


Last time I saw the oncologist, I told him that it seemed that I felt great while taking the Sutent and then in the off week stuff started showing up. He just kinda smiled. I can only imagine that if side effects are going to show up in week 3 and I was still taking the chemo, it might be more than a nuisiance. He's a smart man, I'll follow his instructions. "Chemo brain" is real. My processor doesn't work as quickly nor does it multitask at the same pace as before.


Probably the most maddening thing is fatigue. I'm used to doing whatever I want to, whenever I want to. I used to work all day long outside and keep on going even after I was tired. I've noticed lately that sometimes what I want to do is stop what I'm doing and sit down for awhile.

I think I'll try golf soon. First of all I need to take advantage of the cool weather of fall, and second, maybe having a tight right abdomin will straighten out my swing and eliminate that slice. Nine holes in a cart shouldn't be too bad.


The incision reminds me often that I'm not over that yet. I've been spinning with my buddy Joe two days a week. It's really kinda mosey spinning....we do peddle for 30 minutes but mainly we're catching up with each other...we don't believe in exercising so hard that we can't talk.

Then we go to the club restaurant and I get a big ol' cheeseburger.


We're discovering the pleasure of eating at home. I think it's great, the cook may not agree. Debbie is actually a good cook and is being a good sport. Lordy,I hope we don't go back to our vegetarian phase again. Actually this diet isn't as restrictive as first imagined. Salad is back. I'm tolerating the Coumadin (blood thinner) well enough that Dr. Baltz said I can add back the salad and he can adjust if needed. Maybe I was just bellyaching about not having many choices and he just had heard enough !!!!


I may have lost my unibrow. Either that or it's getting white like the rest of the eyebrows. I'll send a pic.... you may say dang! he's looking old. It's only on the outside...

We're hangin' in.
And now a word from Carrot:
When Bryan says he gets tired easily, he still sets a pretty high bar for himself. When I say I'm tired, that means I'm heading for the couch with the remote, an adult beverage, and lots of magazines. This weekend included doing a quick house cleanup after our year-long remodeling project because Barett and friends were coming to Debbie's Bed and Get-Your-Own-Breakfast. We got the three guest bedrooms made up and presentable (no boxes of undetermined junk lurking). Then Saturday he recycled 6-wks worth of paper, plastic, and glass; accompanied me on a shopping trip; put together and installed three new headboards; endured the highs and lows of a referee-influenced loss to Florida; entertained guests; went to church; walked around the yard to plan the landscaping remedy to rainwater encroachment into the garage; and answered some work emails. Who wouldn't be tired. Plus, he's managing it uncaffinated and unsalted. Give the man a round of applause. Better yet, give the man a reply! Since posting comments is daunting because the whole Byrd Village sees it, email is private. Try this one: greatspeckledbyrd@gmail.com. He'll love it.


Wednesday, October 7, 2009

No More diet Coke

So, after YEARS of promoting low sugar, whole grain, low fat, fresh fruit, leafy greens, orange food, the nephrologist's nutritionist recommends to us a different way. It seems that potassium and phosphorus are also Bad Things To Eat for Bryan (along with salt). The list of Things to Eat in Limited Quantities includes bananas, canteloupe, tomatoes, whole grains, fiber, beans, peas, and fruit juices. And dairy. Don't eat in restaurants very often.

No more biscuits. No more ham, bacon, bologna, or sausage. Measure cheese in ounces.No more cashews. No more black-eyed peas. But, get this. . . drum roll . . . no. more. diet. Coke.

Now, she's used to advising patients who have chronic kidney disease. Being a One Kidney Wonder is similar but not the same. Bryan has to protect his One Kidney but also control blood pressure and fluid retention. It's just weird to hear that whole grain bread is difficult for his kidney to deal with but fruit pies are all right. Whole grain bread, no; English muffins, yes.

He can have all the steak, sea food, chicken, sugar, and fat he wants. (Not really, portion sizes count, but those foods aren't on the no-no list.)

The anti-vitamin-K diet is super-imposed onto the save-your-kidney diet. No leafy greens. No broccoli, turnip greens, brussels sprouts. No cranberries. No grapefruit. No pepper. No Mexican. No spice. No oatmeal. No sweet potatoes. No baked potatoes.

Beer is not good. No mention of wine. I think it could be classified as a fruit juice product which seems to be fine.

This will take some processing time. Not to mention the fact that MY diet requirements are definitely different: whole grains, lots of fruit, green veggies, low fat, lots of calcium, plenty of potassium, . . . . How does this mesh? Gotta work on it.

Maybe we should just have a few days of fasting or just some wine and cashews. Oh, wait, he can't do that. Apple pie and diet 7-Up? Plain popcorn and water?

We not only welcome but BEG for suggestions, recipes, life experiences, etc. I don't know where to start.

Carrot

Monday, October 5, 2009

The Southwest Classic



Greetings from Dallas.
Our main job for the next few months, according to Dr. Baltz, is to be dull and boring. Just take the meds and keep on keepin' on. After we do that for awhile, then we'll check and see how things are. Well.. where do I pick up my prescription for being boring?

This weekend we went to Dallas to visit our friends, the Sutcliffes. This conincided with a trip to the new Cowboy's stadium where the Razorbacks and the Aggies of Texas A&M were kicking off a new 10-year scheduled game.

Vic said, "we'll take you and pick you up, it's not far." PERSPECTIVE.... in Mountain Home, Arkansas, 3 miles is not far to us... we live in Little Rock... in Little Rock 20 miles is not far. In Dallas, not far is about 45 miles... thanks Vic and Gail for hauling us around.


Bonus: We also got to go see Dr. David and Jenn Sutcliffe and Little Sutcliffe, Anthony. We're used to Moonpie Elliot.... Anthony is 4-1/2 months and he's on the other end of the bell curve. Sweet baby...I've dropped in a pic. His mom and dad are graduates of A&M so Anthony was all dressed for the game. He might have even had on an A&M diaper....above my pay grade I missed all of that.


I don't know how to arrange these pics....but they include: Taking Sutent in Cowboy stadium. Clowning while taking Sutent. Me in my Hog shirt and Anthony in full A&M fare. Nana in front of Cowboy Stadium. Inside the stadium with red hogs all around the stadium. Jerry Jones was a Razorback, you know.


Ok, I'm trying real hard to be dull and boring. I'm tolerating all of the meds. I do get tired sometimes, but hey I'm almost 6 decades old. Maybe I'll pull out that dull/boring perscription from time to time, but my original reaction to this thing and Dr. Baltz's admonition still holds....just because I have cancer doesn't mean that I'm gonna quit living.




y'all be sweet


One Kidney Wonder

Saturday, October 3, 2009

Apparently, OKW is doing fine. I haven't heard from them in DAYS, they're off to Dallas to watch 'dem Hawgs, so...
I'll try to pin him down and get an update. Mom did say that his hair hurt the other day. Interesting.

Friday, September 25, 2009

The Tie



I'm sure the tie has been the source of much speculation..




So...here's the story. Once, about 15 years ago, I was in Italy on an equipment buying trip and


as is the custom of my wonderful Italian hosts, they presented me with a


gift as I was leaving. I didn't know it at the time, but we had been touring tile


factories in a specific region of Italy that was also known for the silk trade.


So they gave me this tie.... very nice, very expensive, pure silk, and it has little


geese all over it. It's a very unique tie and I've never seen another like it.




So.... I put my goose tie on one Sunday morning and wear it to church. After church our associate pastor says "what is that on your tie....it looks like sperm to me". When she reads this, she'll get a chuckle. And I still do occasionally wear that tie to church on purpose. I had never noticed...I had only seen it from up close and it is geese. see for yourself.




Isn't life funny sometimes.




Today, I finish the first round of Sutent. 14 days on, 7 days off, 14 days on, and I'll start a week off. Then we'll do it all over again. I do have some minor side effects. I think it's about time for my hair to turn white....this week I've noticed that there is a little irritatable rash under my hair. I can put up with it because I normally don't wear a hat, but I noticed it on Wednesday when I was in Houston looking at an old courthouse...and we had to have hardhats on. The other thing is that we spent the better part of Tuesday afternoon and Wednesday morning climbing stairs in and around that courthouse.... wore me out...I'll blame it on the chemo.




Gone to my 40th High School Class reunion this weekend...Should be a hoot...we're all old people now!!!!




Purple Hull

Monday, September 21, 2009

Really, it could be so much worse.

FACT: Dad hearts Emmylou.


I think we have all been vascillating on the line of what is the appropriate respect/fear/attitude/ignorance(the verb)/obession to give the Rotten Kidney Disease, and I think we're trudging through... feeling it out as we go, but I can't seem to get myself too down about it. Really, it could be so much worse.
I have my moments of envisioning what I wear to Dad's funeral(sorry Dad... you are wearing a loverly suit and that goose tie that looks like sperm from far away), and how I'll explain it to my children, and if I'll need to delete emails and phone records so they don't sneak up on me.. I suppose my visions are psychological preparedness or something.... WAIT, not my point. My point is that so much more often than that, I am reminded that Really, it could be so much worse.
I see kids every day that have gotten the short end of the stick. Not all those kids, mind you... as I don't consider a disability a short stick AT ALL! Ethan is still asking me for a full leg orthotics and a G-tube so he doesn't have to eat dinner anymore. But some kids, for some reason, have gotten a shitty road laid before them. Suddenly injured and not the same, abused, or chronically ill child: those are worse. No question.
No offense Dad, I wish you didn't have Rotten Kidney Cells floating about your vessel, and this blog may label me "Cruel Loveless Daughter-Blogger PooPoos Father's Metestatic Kidney Cancer!," but I don't mind. I know you know that I know that you know what I'm talking about.
I know it may get worse. I'll worry about that if it happens. Right now, right this minute, I know everything's alright. If I'm so caught up in what tie Dad's wearing to his funeral, I can't appreciate the gigantic CORN DOG! he brought me from the game last weekend, or the magazines he mailed me that I left at his house (made my DAY!), or the brand new appreciation I have for Diet 7-up. Delicious!


Here's dad taking Chemo at the game. Thanks drug-nerds. I wish I had half your brain power.


This is us,
E to tha A to tha B

Saturday, September 19, 2009

If I pulled this off, I'm totally awesome. I didn't even have to call family tech support.

Thursday, September 17, 2009

Hey- it's the absentee blogger. Dad just called to tell me he had prepped a blog, but had gotten all the pictures screwed up and now couldn't fix it. He sent me the most twisted, bungled mess... but I fixed it. As he states below, we're living life as normal. The Oliver Bed and Get your own Breakfast (stolen wit from Mama)is underway... it's football season. You know... when we first got this diagnosis, I wondered if Dad would ever come over again. Here he comes. As Ethan said when I told him they were coming "Oh good! I love them!"
Hold please... here's Dad...

STILL KICKIN'

For those curious among you, things are going as expected I suppose. I don't know about the rest of the world, but I'm going about life as normal.I'm not sure that I had time for full time employment anyway. I've been a busy boy.
Eli came over early last week and he got the school lunch menus out and wrotetickets for me to come eat lunch with him on a couple of Fridays. I'll attempt to attach
a picture of how a first grader goes down a slide...makes perfect sense to me. That was last Friday, and tomorrow is Friday again. I think we're having grilled cheese sandwiches.








Don Bell's sister found some old campaign flyers from 1968....geeeeze that's over four decades ago. Don mailed them to me early on in this saga, and I just found them again under a pile of medical invoices. I've attached a picture. The theme of course was Byrd's the Word..... remember "popppa um maou maou" If I was more technically proficient I would download it and have it playing in the background as you read this blog :) The relativity of the old picture is that my newest side effect is exfoliation . So I'm getting a chemical peel whether I want it or not. Maybe when it's all done I'll look like I did in 1968 NOT ! And only $ 7600 per month ...cha ching


I saw the Urologist (Dr. Langford) today. Debbie had an appointment with him today so I went along. They all kinda said...."what are you doing here" then "oh, y'all have traded places" I didn't know that I was that memorable, but I'm tellin' you, I have been exposed to an incredible group of medical people that want to practice medicine. Anyway, she's gonna get that CT scan she's been wanting since I had one and maybe he can figure out the UTI.


My Momma came down for a visit, and we had a nice time. We also took a whirlwind tour of the State Capital Building while we were waiting for her ride back home. I think it wore us both out, but we did have a good time.


Off to Fayetteville this weekend. Hope we can take care of Georgia. This will be another test of the recovery. We'll keep you posted.


I barely have time to work anymore !!!!!

Purple Hull
























Sunday, September 6, 2009

Connections


When we built our house nearly 28 years ago, one of our intentions was to be a welcoming place. Having our family and friends come here is one of the great joys of our lives.

Thursday, Diana came through. We talked about life in California and the problems with funding the libraries there. She is on the BOD and works to find creative ways to keep the doors open. (She's resisting getting an electronic reader--loves the feel of the book in her hands. And she hauled a Key Lime pie all the way from California.

Friday night, Rachel and Matt arrived with friends Meredith and Brook. We caught up with their worlds. (Meredith broke a bone in her foot and had surgery last week! She's a true Hog fan to trek from tail-gating to stadium seat.) Rigby, the dynamic puppy, enjoyed running, bouncing, and talking dog to Buck and Phoebe. Matt is working to make Coors a greener company. Rachel makes everyone look better in print or online.

Saturday we made the big Game journey. This picture of Joe shows true friendship. Bryan really wanted a dietCoke but the scouts only had water and real Coke. When the boy came back up on his return trip with a new supply, Joe was trying to get his attention but couldn't so he just sat down in the way. Bryan got his diet Coke. The world righted itself again. And we won the game. WhoooPigs!

Today, Judy and Roy (Alicia's parents) brought Eli and Emily out to play while Sam and Alicia held another open house. The place was full of energy. We had a full table for dinner and a little bit of not-a-school-night lingering.

Typical? Yes. Tiring? Yes. Feels good? Absolutely. It's why we built the house. It's why we're here.

Love.

Well, I think we have a side effect here

Hi all,
I finished my first 14 days of Sutent on Friday night so now I have 7 days off then will take it up again for another 14 days and then off another week...and thus cycle 1 will be done. The number of cycles is at the moment undefined.

Last night we went to the Razorback game, and before the game we stopped at a local place with our friends Joe, and Mary Helen, and their son Chris. I ordered my favorite.... Pizza...thin crust...italian sausage...light sauce... extra cheese. And man, was that a good pizza. Game went well, I stayed for the whole thing and life is good!!

This morning I decided to have some California Key Lime Pie (story to follow in this blog) for breakfast. It just as well have been puried newspaper. No taste... so I'm thinkin' did I burn my tongue on the pizza as I often do because I like it so much can't help myself? Nah. I would have noticed it and it's always the roof of my mouth. Following that with a tasteless diet coke confirmed the loss of taste. Even a glass of water tastes like you would think stagnant pond water would taste. That would make the milestone at day 16. Oh well, I'm sure it will come back. Either that or I might lose that 5 pounds again. Removal of a kidney got me down around 15 pounds, but I wouldn't recommend it as a diet.

Now to the PIE. My cousin, Diana Dearmore, lives near Sacramento and she flew in late
Thursday night to spend the night on her way up home. She unloaded from her rental car a perfectly kept Key Lime Pie. She had bought that pie in California, checked the TSA regulations for flying it on the plane , and was prepared to argue with them if it couldn't make the trip in the passenger compartment. I have to tell you that my dear cousin wagged a key lime pie around all day via Southwest Airlines so she could make sure I didn't run out. It arrived intact and I had eaten some Thursday night, Friday, and Saturday (sharing of course) so I know it was good. I shall not waste another slice until the taste buds return. That's just one of my crazy cousins. Actually I'm one of 30 first cousins on my Dad's side and none on Mom's side. I do have more than my share of wonderful kinfolks.

Tomorrow is Labor Day, and I plan on doing as little as possible again. I really am feeling about normal for somebody my age. Joints ache sometimes, think i'm catching a cold maybe.....but
to me thats pretty much normal. I'll have an appointment next week with a nephrologist. Since I'm down to one kidney, Dr. Baltz says I need one to adjust b/p and all sorts of other things that kidneys do. Who knew that kidneys were involved in adjusting b/p. Maybe that's why mine had gotten on the high side of normal in the last 5 years. Now after surgery, it's in the high category in that the bottom number is high. I think it is partially from the Sutent and partly from just being an OKW. Never can have enough Doctors I guess. I've run into a good double handful of really outstanding ones in the last 8 weeks.

Seems like a long, disjointed post again.
I'm feeling the vibes from y'all.
Purple Hull

Wednesday, September 2, 2009

Hugs

That's my favorite part of the visits, the hugs when the doctor comes in. Nice.

The scans don't show anything new. That's good. Blood levels stable. That's good. No side effects from Sutent. That's phenomenal! Doc says Bryan is in the top 5% of folks recovering. . . I asked why. . . he said some people just do better than others. It must be frustrating for scientists to not be able to pinpoint the variable that makes the difference. Prayer? Friends? Driving a drop-top? Playing with grandchildren? Having an amazing wife? Laughing? Genes? Drug therapy? We'll take the result, whatever the precipitating event.

Dr. Baltz did say that it's the scans three months from now that are important. A lot can happen in three months. Football, leaves, Halloween costumes, parent-teacher conferences, Thanksgiving, making tile, finishing this remodeling/decorating project, just life. . . .

Go hug somebody. I was directing traffic in the hall: "Walk on the right side! We won't let you have a driver's license if you can't stay to the right!" As I spread my arms intending to show kids where to walk, one kid just melted into me, obviously needing a hug. Now, teachers are warned about the dangers of touching students. All those accusations of nepharious intent---but, this kid will always be connected to me and will listen when I talk to him. So sue me.

The One Kidney Wonder is working madly to finish all the invoicing and posting and whatever he does. Thanks to Sam the Computer Wonder for connecting Dad to his office computer from home. Magic.

We love all of you. And we love your comments. Notice the tiny little word down there? Click on it and write back to us. You have to use the drop-down menu to choose what email account you're writing from. And you might have to copy those strange letters to show that you're real and not a computer-generated response. All bloggers love comments. And these crazy Byrds love ALL of them!

Monday, August 31, 2009

Navel Gazing

I had to explain to Bryan what that means: watching yourself to the exclusion of everything else. We haven't devolved to that point, but after 10 days of Sutent, we've both done a lot of detailing every twinge. So far, so good. Sunday he felt tired all day, but he had been playing with consecutive grandchildren since Friday afternoon. That makes the most healthy and enthusiastic grandparent take a deep breath. Today he's felt just fine. He worked all morning then went to see Bobby Petrino at the Touchdown Club then worked until 4:00 when he left for his weekly check-up. After having his blood drawn, he went outside to make some phone calls and saw a fire truck and an ambulance pull into the parking lot of the clinic. Later, the nurses all came into the waiting room and said they had to reschedule all the remaining appointments. No one actually said what the emergency was, but it was obviously very dire. Bryan assumed that it was someone in the chemo room. That's certainly going down fighting.

Segue to my daily life: Tomorrow afternoon there's going to be a pep rally at school. I have to escort my 7th period class that is excitable during boring grammar lessons. They'll be over-the-top wild when given encouragement to scream. I bought ear plugs just for the occasion. It's funny how being in the midst of a college football crowd doesn't faze me, but middle school kids are almost unbearable when they're off the chain. Think of me.

The Arkansas Razorbacks kick off the season Saturday evening at War Memorial Stadium in Little Rock. Our seats are pretty good, and we got the handicapped sign for the car, but, still, it will be a daunting event for Bryan to get into the stadium and then endure the stairs, getting up and down, etc. We'll just take it slowly. There will be 10 of us there; surely someone else can go on a diet Coke run. Note that at no point has OTW said that he'll just give his ticket to someone else. There's a reason why he's always in a red shirt, ya know. Today he didn't even have a reservation at the Touchdown Club. It was supposed to be sold out. He went anyway. I told you he's an optimist. He dressed in his Razorback shirt and khaki shorts; he looked like a cheerleader. The "girl" at the desk said, "Cute knees," and let him in. Of course, he saw friends who had an empty chair. If I didn't have to teach school, I'd have been there.

(BTW, Brett Favre is doing a credible job tonight. Minnesota is ahead right now.) We're glad this is a Baton Rouge year for the LSU game. Winning three years in a row just might give Bryan a heart attack. We'll just have to watch it from the couch or maybe Shaun's couch. (We probably don't have to worry about the three-peat, but we always hope.)

Since we talk about all our ailments here, I'll share that I'm on my FOURTH antibiotic for a persistent UTI. Some kind of super bug has ahold of me. It doesn't hurt anymore, but all the re-checks show it's still here. Since the first round didn't kick it, Dr. Cranford has been growing a culture and checking the efficacy of each antibiotic. Cipro--no; Levoquin--no (sorry Brett); tetracycline--hope so. After all the expensive ones don't work, we go back to the old friends. I just can't get pregnant while I'm on it.

We'll let you know when we get the details of the scan. I'm sure I'll get through the pep rally.


Thursday, August 27, 2009

Five Days of Sutent and counting

Hi y'all,

Ok, we're five days into this chemo..and I think it's going well. I haven't felt any side effects except being super aware of how I'm feeling....I think I probably ate too much BBQ the other night....and added Key Lime Pie after, then blamed it on the Sutent for feeling a little "different" at bedtime. There is probably a psychotic propensity with diagnosis for that, and it could be cured with a daily ( or hourly) shot to the belly, so I'll just keep those symptoms to myself.



So, this morning I had to get up early and drink about a pint of Barium laced with banana flavoring so we can get a neck to knee CT scan done. This is the base line...find all the bad stuff. Well, my self-awareness psychotic disorder kicked in and I was afraid I couldn't get it down, or keep it down.... but it went fine....thus my self-diagnosis of the self-awareness psychotic disorder. As a Presbyterian, I can gladly say "whew! I'm glad I made it through that."



Well, so about that CT scan. Dr. Langford ( best darned Urologist in my book ) said that he

had reviewed the scan and there were no changes from the pre-operaton scans EXCEPT there was no rotten kidney on my right side. Vena Cava looked good. ( Venacava... sounds like a good name for a sailboat. I've got one that's been sitting in the yard for 3 years begging for the lapping of waves against her bow.



Bottom Line Good News, the battleground has not shifted! The scans and written report are headed over to my main warrior, Dr. Baltz. He'll give them a look and we'll continue with the plan as it is set or change it as the Capt'n sees fit. We'll see him again on Monday.



I took two road trips within the last week.



First was on Sunday to Mountain Home. My Aunt Margie, my Dad's sister, died after a long battle with Alzheimer's. She was 91 and in addition to being my aunt, she was forever the librarian at the Baxter County Library. Anyone I ever talked to about her would say " I remember climbing those steps to the library up over the fire station and she would help me find a book or read to us in the summer." I feel both the sadness and the relief for my cousins. I can only think of the celebration of the reunion of her body and mind.



Then on Tuesday, my buddy Joe and I drove to Greenwood, MS to visit Viking Range, a customer of mine. We made some tile for their restaurant, Giardina's, associated with their hotel and cooking school. I needed to go see it. You can see pictures at http://www.restorationtile.com/. We got to drive through lots of soybean fields and corn fields. Greenwood had a sign at the city limits that said " Cotton Capital of the World". I was surprised that there wasn't much cotton, but I suppose I can say, "Joe , we're not in SriLanka anymore." What a deal, a road trip with my good friend, and I get to write it off.



Wow...that's a lot of writing for one day... time for my nap.

Purple Hull

Saturday, August 22, 2009

Sutent: Round One Day One




We have received the highly-touted medication. We're just incredulous over how much it costs AND that NovaSys is picking up the tab. We have met our deductable and our out-of-pocket max for the year (until October1 when we start all over) but we're still amazed. Thank you doesn't seem adequate.

Now we watch. Next week he will have a whole-body scan which will be examined in minute detail. That will be the baseline for measuring success. As long as no nodules grow and no new ones appear, he is considered stable. Any decrease in size of the lung nodules is over-the-top wonderful.

Everyone who has seen or talked to OKW since surgery knows that he is not only healing quickly but also still the most optimistic person ever (unless you get to talking about politics; don't even start). One person of a certain authority chose to cut out all this positive thinking by reminding him that the prognosis for RCC is poor. Without missing a beat, Bryan replied that he intended to change the average. I still can't fathom why anyone thought that we don't know what's going on. We just refuse to let it get in our way. We're realistic and (how I hate this word) pro-active. We're also not holding back. I haven't actually seen the sign, but our friends in Texas tell us that a singer (Kinky Friedman?) decided to run for governor (?) and his slogan was: Why the hell not?

So when you see us out and about, taking it all in, we're just following Kinky's advice.

Thursday, August 20, 2009

Getting Short of Pie Around Here

.... and it's probably a good thing.

Hey all you guys. I'm doing well here. I've been making the Doctor rounds since it's been a full four weeks since the notorious kidney became toxic medical waste. Saw the Urologist ( he's the guy that actually removed the kidney ) on Monday and he and his nurse just kinda shook their heads and said you look in great shape. I think it finally dawned on me that removal of an organ is MAJOR SURGERY. But, anyway I seem to have impressed them with my ability to bounce back. Saw the Cardiovascular Surgeon today ( he's the guy that pulled the intruding tumor out of the vena cava ( I have a vision of both surgeons ahold of it pullin' that tumor out of that vein). checked the vena cava for damage, sewed up the carnage and stitched and glued me back together ). I commended him on the closing of the incision. If it's as pretty on the inside as it is on the outside he's an amazing surgeon. He also said that "we're through with you". I'm completely turned over to the Oncologist/Hematologist now.

Well, truth be known, Dr. Baltz ( the Onchologist/Hematologist/Cheerleader to a mottley band of Cancer Patients/ Miracle Worker/ Man that really really really likes to Doctor) has been in charge of what I'm gonna do for about four weeks now. I have seen him in the hospital as well as in his office for several visits. We're now about to finish up the little shots in the belly that prevent throwing clots and bad things like that that are part of the MAJOR SURGERY thing. I get Debbie to give me the shots because I can hardly get something out of my own eye and I just can't wait for that part to be over. She's been a trooper, giving me those shots! Low and behold.... zap.... last Monday he says you're deficient in B12. Who Knew? And guess what.... a shot in the belly once a week from now on. The nurse made me do it myself DAY-UM!!!!! I suppose it must take a hematologist to find such things because folks been taking my blood for years for annual checkups, etc. Everybody ought to go get a hematologist and don't get low on B12 'cause you wouldn't like those little shots either.

The SUTENT has been approved. I guess it is chemotherapy although it is taken orally instead of intravenously. Thank God for PhD medical researchers that find better things and better ways to administer them. Of course, I started talking to Google. Dr. Baltz told me to not read that stuff....but hey, I got nothing to do all day. Scary Scary Scary. So I asked him
last Monday, what do I need to get prepared for? First thing he says...." you been on the internet?" He looked me straight in the eye and said I don't expect you to have any side effect from taking this drug ( or something to that effect ). Whew..... big sigh of relief. This guy likes to Doctor. I'm going to see if he can really get my hair white like my Grandpa Dave Byrd.

I'll have a base scan mid next week and then take my little pill every day for two weeks and then lay off a week and then repeat. Go about my business as usual. Oh...speaking of business...... I've been going in for 2-4 hours a day. I've found out that that works !!!!! I concentrate on what I need to do.... push my employees up a little.... then go get lunch and go home.

I know this must be rambling, but hey ... I've had anethesia ! I'm gonna try to post a picture of me right now...but i gotta call one of the kids to figure out how.

Purple Hull

Wednesday, August 12, 2009

Back to Normal

Dr. Baltz asked me whether I thought Bryan was ready to drive. I said that he might risk himself but he would NEVER risk the T-Byrd. So, he's off on his own tonight, gone to play music with the Pickoids. He took his mandolin since the banjo weighs too much for him to carry. He also shaved this morning. I didn't even notice until lunch time when he asked me how I liked it.No more beach-bum beard. Just normal.

He has been amazingly calm about ART. He has been in a few times to do some trouble-shooting, make payroll, and visit a little. But then he comes back home. How wonderful to not worry about his business. His crew is making tile, sending samples, answering crazy phone calls: "Do you ship tile?" No, we just make it and pile it up . . . .


Sunday, August 9, 2009

Yes'm, we'll have the whole pie...



We were sitting at the annual ART board meeting on Friday night, and it was time to order dessert. Dad asked for a piece of Key Lime, I did too, then dad said "we'll just take a whole one." The nice woman with a foreign origin said "dee whol pi-ee? it wheel coust ** doll airs!" Dad said "yes'm, we'll have the whole pie."
This will be important later... you'll have to read on to see...

I think the hardest thing to swallow about this whole diagnosis (for me, remember... my perspective only...) is the irony of it all. Dad worked for almost 30 years for an established tile manufacturing plant. He worked hard because he had a nest of Byrds to feed and clothe and take on vacation. He didn't complain about his job, I only have this perspective because of the sudden change once he was self employed.
He didn't complain, he went to work, he was suddenly disappointed in some choices they made, and was forced to go out on his own. Thank goodness for their poor choices, as a happier man ensued. Now, he works equally as hard for himself, builds and grows ART, sees its success, gets all his kids' weddings paid for, buys himself a two-seater, and drives it to get his cancer diagnosis. Disappointing.

Dad has always been a buy the whole pie kinda guy, but not necessarily for his own enjoyment. There was this plaquard that used to hang on the upstairs bathroom wall, until the Great Renovation of 2009... it said My father doesn't tell me how to live, he lives and lets me watch. We have been watching. He's of a service-dog mentality. He likes to help. He likes to drive old ladies to church. He likes to help people on Christmas when their pipes freeze and bust. He likes to move walls for mom so she can say "ooh! you're strong!" He likes to save his grandchildren from their parents. But finally, finally! he's just helping himself to all that is his. It was nice to see at the beach.

All that is his. Maybe a diagnosis helps you see what is yours, and finally enjoy it as your own. He took a nap every day, he wandered to and from the water, he ate cheeze puffs with Emily, he laughed at and with the fools his daughters chose to marry, he goo-gooed with Elliot, he pow-wowed with Eli, he talked about gravity and rust with Ethan, he ate his pie.

The beach has always been a re-set point. Summer's over - School's starting. Wow I'm jiggly in this bathing suit - I'm going to work out as soon as I get back. Rachy's engaged- There's gonna be a wedding. By the time we come back, Elliot will be born. Next year all the kids can sleep in the bunk room. Next year we want a house with a pool. Next year Dad will have been through a year of Sutent and his hair will probably be all white. Next year. Next year. Next year. It's why we go... to reset for our next year.

This year, we'll have the whole pie.





Monday, August 3, 2009

Ensconced on the beach

OKW became ensconced on the beach yesterday. He wasn't able to participate in the annual sunshade construction project but he did get to enjoy watching the kids playing in the sand.



Yesterday afternoon he introduced the grandkids to "the scar". It was ignored for the most part, we'll see as the week progresses.

Sunday, August 2, 2009

Ahhhh

You know how some places feel like home, even when you're not home, just that feeling of home...
We're finally home. The air is warm and salty. We're sitting in cheap plastic chairs on a weathered deck, everyone is still intheir suits from our day. The new kids are all asleep, so it's just the old kids...the original beach crew.
We used to go to the Murmuring Surf... It was in Destin, and was a glorified beachfront camping ground. It had cinder block cabins, iddy biddy beds, iddy biddy towels, and big big fun. We went every year, sometimes twice, sometimes thrice, until some hurricane blew it to smitherines. We had to branch out and found out that other places have tvs, ovens, microwaves, and more than one bathroom! Shazaaam!
We miss the physical Murm, but still murmur amongst the surf...every year, every body, we all come home.

Thursday, July 30, 2009

Welcome back Dad. Per report of my sisterbaby, he didn't take a pain pill today. That is so me. I don't like how those make me feel... neither does he. All wacky and fuzzy. I talked to him a bit ago as well. Said he's drinking Diet 7 up?! That's creepy. First of all, of all the bevs on this planet, Diet 7 up? I'm not knockin' it... I guess I should try it... but just a little odd. AND... he said he drank a cup of coffee with mom the other day. NOT A DAY IN MY LIFE HAVE I SEEN MY DAD DRINK SOME COFFEE... and I'm going to be 32 this fall.
I suppose with a diagnosis like this, one may retreat to the antithesis of the sequalae.
I will enjoy enjoying a cup of coffee with dad.

A little politico... funny how you see things you never did before... would I have ever clicked on this New York Times link a month ago?? Um, moment of clarity.. I won't post the link, because it would send mom into some sort of grand mal seizuresque fire spitting skin peeling episode, but it was all about how health care companies should ration, what drug? Sutent. Is it worth it this Sutent? Should our premiums go up so some dude can extend his life with Sutent?
Suddenly, this dude happens to be Dad, so yes, it is worth it. Keep payin' your premiums and I will too. Worth it.

I have been urged to post by the patriarch via the matriarch. It is, afterall, my blog, and they are looking for any changes in perspective.
Perspective 1: Dad didn't die during surgery. This is good.
Perspective 2: Was worried he would be really creepy sick during recovery, alas, he was only wacky that one day, but slept it off and got back to normal. This is good.
P3: Perspective is a long word to type over and over, so i'm going to abbreviate (another long word).
P4: I'm envisioning some sort of scar busting incision bursting splatter of ooze if one of the grandkids (my Ethan I speak of specifically) forgets that PawPaw is not their usual trampoline o' fun. I got the big truck stuck in the sand once at the beach, and that had exponential consequences. I was pregnant and so obscenely chubby elsewhere, that the family took pity on me and didn't scold me so hard for having to get wenched out of a sand ditch.... Anyway... I'm worried the scar busting gut ooze would be all my fault, and that would be bad.
P5: Dad's not dead. I know many people in my circle who can't say the same thing, and for this, my perspective remains the same.
P6: Luckily, for us kids of D&B, I don't perceive this diagnosis bringing anything to the table that wasn't here before. We love eachother, we show up on eachothers doorsteps, we tell eachother that we need eachother. We go to the beach. We call just to say hey. If that bumper sticker is true, and in case of rapture my car is suddenly unoccupied (mom got a kick out of expalining that one to us in the back of a doo-doo brown VW Rabbit in the early 80s), then there woulnd't be anything left unsaid.

Perspective complete. Must leave my life as writer, and return to life as Mother of Two Trying To Pack In One Suitcase Because I'm Also Married To An Accountant And That $25 Extra Baggage Fee that American Airlines has Started Could Better Be Spent Towards An IRA or A Savings Account so We Can Retire Someday Fund so We Hope There's A Washer and Dryer There Because Everybody Only Gets Three Pairs of Undies.

Lervy Dervy (hang around with us enough, and you'll learn our Byrd-speak)

Lervy Dervy, Meaur.
E

Living with a New Ride


We actually had an offer for a trade! Thanks Vic and Susan; we think your kind offer is awesome. Trading the T-Byrd for your car would have been a great solution. We actually got your phone call as we were driving home in the new car. We just didn't know how to operate the hands-free system and hung up instead! Anyone who missed the offer can still come ask to drive the car. I don't know whether OKW will agree, though.

We went to three different dealerships today and finally made the deal. It's a good time to buy a car. We got LOTS of attention. This car has more computer power than early space vehicles. The absolute best feature, besides safety and functionality and all that, is the GPS system. Many of you have heard the stories of my driving adventures. Lost R Us. Cheryl Dawn and I drove past our Pa-pa's house because we were talking and driving at the same time. Yes, he had lived on that same road our entire lives. Bryan asked me to pick up something from one of the tile distributors in Maumelle. Yes, I had been there before. No, I didn't find it until I had passed it twice. So, I am just tickled to have a big ole screen that will show and tell me where to go. (CD, our road trip is on.)

The One Kidney Wonder has made great progress since getting home. First, he slept a lot. Then he started moving around. Having construction workers in the house helped; he had to go see what they were doing. He's gone up and down the stairs without incident. Today, we stopped by ART on the way to the car lot. Everyone was thrilled to see him. I had to shepherd him out before he got too tired to car shop.

His hoarse voice is a mystery. It's too late for irritation from the intubation during surgery. I hope our resident speech path will solve it for us next week.

We are grateful for our permission to make the Great Annual Beach Trip. We are taking all precautions. What do you do when you get a diagnosis of cancer? You live.