Gosh...Has it been a month?

Hi friends,

It's been a whole month since I reported in. There is a lot of same ol', same ol' , but we've had a busy month and seem to be doing pretty well.

Three weeks ago I had the worst set of sore feet I've ever had. It lasted a complete 12 days. I could still get around, but I think that I was compensating in the way I walked and somehow got a sore hip and thigh. Feels like a pinched nerve to me. Doc wasn't particularly worried about it...I suppose he's seen worse... nurses asked if it was discolored and sore to the touch...when I said no, they said ok. The sore feet went away when I got to my off-Sutent week. The internet theory on the sore feet side effect is that the small capillaries in your extremities can rupture and some of the Sutent seeps out into the muscle. I didn't miss any work (probably should have) but I spent lots of time sitting down.

Doc, the wizard of the hemotology and oncology, decided that I was anemic about two weeks ago (another one of those side effects) and since he wants all of my systems strong so he can keep kicking the hell out of the mets at full dosage, he prescribed a couple of units of blood. So last Friday, a week ago, I went to St. Vincent's and spent about 8 hours getting a transfusion. On TV they install blood at a much faster rate than real transfusions. Turns out it only costs about $500 per hour. Rumors are that you get instant perk, I musta missed that part, but I do think that I have more energy. We'll check blood again next Thursday.

Spring break was last week. Debbie has a side effect from teaching school.....when it's spring break, she has the strong urge to feel sand under her feet. So, we took a few days to go to Pensacola. I wish we could get Al Gore fired up about global warming again because it was cold

at the gulf coast. I have thin blood anyway and it doesn't seem right to be coated up in a beach chair. Sunscreen is about 3o SPF and I guess we had on our SPF 200+ polartec and gortex.

You'll be happy to know that I have had no loss of appetite. I've given up pie, but I seem to find other things to stay well fed. I did get some new sunglasses....cool dude huh!

We're hanging in. I'm in my 32nd week of Sutent. It's sorta becoming a way of life and I'm not worried about where we're headed. It's not at all bad, just aggravating at times. Thank goodness for good insurance and good friends and family. I still respect this disease and know that it's not always black and white on whether we're gaining or slipping. I think I'll go back to just being Bryan....it's who I am anyway.

Y'all hang in there too.

Bryan

Second set of Scans

Hi All,

Today was scan day. This was the second set after beginning Sutent. Wow, it has been 27 weeks. Being the recipient of this doctoring stuff takes all day. You gotta retire to have time for it. I guess that I'm practicing retirement early. It seems like a long time between postings. I suppose that means that The Rotten Kidney is part of my normal routine now....you just roll with the punches.

I got up this morning, scheduled for blood work at 9:45, Injection for the bone scan at 10:00, CT scan at 10:00, wait a couple of hours, then bone scan at 12:45pm. Meet with Dr. Baltz at 1:00 pm for results. I asked about the quick turnaround between bone scan and meeting with Dr. Baltz, and the scheduler said...you know he's gonna be behind but it will keep you in the que. I could have gone to the plant for the wait time, but I'm weaning myself from that...so I went to get a haircut.....that explains the attached picture. graystinguished huh !

Everything went per schedule until after the bone scan. True to form, we finally saw Dr. Baltz about 3:00.

He came in with two thumbs up ! He didn't say miraculuous this time, but he is very encouraged and encouraging. He said "I've been doing this for 20 years, and at the moment I have about a dozen folks just like you that are doing very well." These drugs were not available until recently and he's making the best of them.

Results: bone scan is clear, brain scan is clear, abdoman is clear, lung mets are stable. Stable means they are not growing. He reminded us that we had tremendous reduction in the size of the lung mets in the first 3 months. He said he still wouldn't recommend biopsy of the mets and that either they were slowing down in response, or they may have shrunk all they could. I kinda like the sound of that. So we will continue on with the Sutent and scan again in 3 months.

I'll have the complete radiologists report tomorrow.

I was hoping for an all clear....darn.... because the most aggrevating thing is sore feet for about 3 or 4 days out of 21. It's not just kinda sore feet...it's " I can't walk on these " sore feet.

To me, chemo conjurs up images of burning veins at the time of treatment and then throwing up and feeling like hell for several days, then having to do it all over again....I think I can put up with some sore feet for a few days at a time. With the specter of "OOOOOO sore feet " I'll have to plan when I go play golf or something else..... tough huh? I think that I have it easy by comparison...so maybe that's why the doctors and nurses just kinda nod when I start talking about my SIDE EFFECTS. I'm a lucky man.

So there you have it.

We're doing well.... Life is good.

Situation Normal

If anyone is worried that Bryan is not essentially the same man as Before the Rotten Kidney, please observe. He did stay home today as sleet pelted the roof. It's a snow day for school kids and teachers (hallelujah). He even slept until 10:00. That IS a change.

By 11:00 he was in full have-to-get-in-the-truck mode. It seems that the diet Coke supply had slipped under the restock-now number. As an earnest believer in meteorologists' forecasts, I knew that we were just in a short dry time before the sleet returned. I warned him. I told him he shouldn't go. Then I told him to take a walking stick to help him back up the hill. Ignored.

It took the diesel engine a good 15 minutes to warm up and the windshieldto clear; then he was off. In no time, the sleet was back. I texted him to hurry. He said he was checking out. About that time the neighbors drove up looking for their dog. The driveway was slushy but passable. Within 15 minutes, their tire ruts were covered.

Next call: The truck didn't make it up the big hill. He drove around to the road behind the house and walked the rest of the way with the whole 24-pack of diet Coke plus another bag of "essentials." He considered all of this as a perfectly reasonable action. I still think it was crazy. Now we're watching golf. He has a diet Coke, of course.

Same ol' dull medical news !!!!

I suppose the contents of the title is a good thing.

I haven't written in a while....and I keep meaning to....but hey, I'm busy.

This must the the dull part of medical treatment. I'm feeling good 95% of the time, and the feeling bad times aren't dreadfully bad. Mainly the feeling bad times are being tired one day, or maybe the obnoxious side effect of tender feet. A couple of days of tender feet isn't terrible, it's just aggravating.

I have a new side effect. My hair is now pretty gray/white and for some reason has turned soft. We had a warm day in mid January, and I put the top down on the t-bird, just because I can. It was actually blowing my hair around. I now have to deal with bed-head and other aggravating things that haven't been present here-to-fore.

The eyebrows are now all white....and I get comments on them!!!! So far it has only been from guys at the gym. What's up with that?

I've posted some pics of bed-head and my new fluffy hair and my new short haircut from today. The white grows from the inside...so I guess I have white ROOTS. When I get a haircut it progressively gets whiter and whiter. A small price to pay.

Medically, my blood work is still all good or explainable. I saw the nephrologist ( the protector of the remaining kidney ) this week. He changed my b/p meds a little. Increased b/p is a side effect of the Sutent and not particularly good for the remaining kidney. He concurred with the Cancer Warrior that all the rest of the blood work looks good. I see the oncologist (Cancer Warrior) next Monday. We're on a three week rotation with him now. I'm in my 23rd week of Sutent.....Thank goodness for Insurance. I'm real interested in the pre-existing conditions portion of health care. My USNews came this week and the cover story is "How to live to 100".

That should be interesting!

So, now we just keep taking the meds and keep living life. We're scheduled for another complete set of scans at the end of February. Then we'll know how we've been doing.

Today is Elliot's 1st birthday. We were there in spirit. We ate dinner with Eli and Emily and Sam and Alicia tonight. So we sang happy birthday to Elliot in absentia and helped him blow out the flashlight we were using for a candle.

Life is indeed good!

Bryan

The OKW turnes 59

Well, the One Kidney Wonder turned 59 last Wednesday. We had the big family celebration this weekend so everyone from the frozen tundra of North West Arkansas could attend. A good time was had by all (best I can tell anyway). I'd add more commentary but I'm out of witty commentary for the day. So, here's some pictures instead, in no particular order. So now we've only got 360 or so days until the big 60. Guess we should start planning soon.

Sam

Eli and Ethan were competing for Paw-Paw's attention while working on their Lego sets.

Elliot was mystified at how this whole unwrapping thing works.

Nana got Paw-Paw a 10-in-one game set. Here he is sniffing the wood.

Elliot kept trying to get Eli's attention.

Thankfully Ethan was willing to help unwrap Elliot's gifts.

The grandkids love all of the Paw-Paw time that they can get. Mine get a disproportionate amount of time since we're just "around the corner" compared to the other 2.

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!

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