Frequently Asked Questions

Since the One Kidney Wonder (aka Purple Hull) often has writer's block, I'm going to nudge him along to get a new post up! We'll see how it works. As least it's different. If this flies, then maybe Rachel and I can get him to add FAQ to his Restoration Tile site!

Carrot: Everyone wants to know how you're doing. I guess they think you're not sharing your pain and suffering. Tell the one about needing crutches on Easter.

Purple Hull:

well, the most aggravating part is the damned sore feet. It seems to be very predictable now, starting the second week of taking Sutent. Sore feet lasts from 8 to 10 days followed by normal feet. Sore feet means that I can't just go do whatever I want. But the operative word is aggravating. I can actually put up with a lot even though I want to throw something and quit taking the chemo so I can just get back to normal (which is not possible). We were headed to Sam's house for Easter dinner and I couldn't walk . . . so Debbie went to Walgreens and came home with a pair of crutches. . . they work. . . and they did invoke sympathy. Within two days we had found the pair we already had in (you guessed it) my workroom :). We've been through Easter sore feet and 12 days of normal feet and now we're back to sore feet...never ending I guess. The rest of the side effects are tolerable. . . lots of people put up with a whole lot more. I can't complain.

Carrot: Do you have a bucket list? Do you want to go back to Europe? I know you'd fly on the Space Shuttle if they'd let you.

Purple Hull: I don't have a bucket list. I pretty much have done everything I wanted to do. The places I have been in Europe (industrial) are pretty much like going to Cleveland, only farther. We are of Western European stock so the faces look normal and the food is normal . . . I'd really like to go to Eastern Europe. . . .My understanding is that it is totally different. . . . and Cuba. . . there is a lot of tile in Cuba!!! Probably needs repair which makes the trip deductable.

The opportunity to fly on the shuttle is about kaput. I'd go in a minute if I could. Maybe I'll buy one at auction when the US Gov. sells our stuff to pay their bills. Then I could take it up myself. . . I wonder how much it costs to fill that thing up. My Am.Express card has no limit. . . or that's what they say. HEHE That"s the kind of thing you want to do for your last thing.

Carrot: Should we get more football tickets or just keep the ones we have? Maybe they'll all be together this season. Will Ryan Mallet's time off for surgery hurt or help the team?

Purple Hull: Surely 8 tickets is enough. We ate tickets last year a time or two.

Carrot: It will be a different vacation this year: Orlando instead of the beach. Which beach would you like to go to next? Hawaii? Antigua? St. Lucia? I need more samples of sand for my collection.

Purple Hull: I'm not sure how my mentioning going to see the shuttle launch became a bucket list item and therefore now we're off to Disney World....but hey if the grandkids want to go then I'm all for it. Hawaii holds no lure for me...except to see the volcanos. The carribean islands sound more fun, and I can get you some sand. Want some from the deposit in North Central Arkansas. How about from Edgar Florida...inland Northern Florida....cool huh? Is it the sand or the beach?

Carrot: Did you like having a real tree last Christmas? Is it okay to give the huge faux tree to Rachel and Matt who have really tall ceilings?

Purple Hull: Actually I prefer an artificial tree.... still not comfortable with a drying out tree in the house. I'd be delighted for Rach and Matt to take the 10 footer. The more of our old stuff you give away....the more we can stimulate the economy! You're such a good Democrat.

Carrot: How long will the sailboat that's never touched water stay in the front yard?

Purple Hull: Somebody had a SanJuan 21 in the paper last week...for more than I have invested in the yard art. Maybe I'll fix it up and make some $$$$. I do take care of my stuff. I'm not sure the SanJuan ever made it to my good stuff pile so if I put it in good shape then we'll keep it FOREVER.

(What? Chemo brain attack!)

Carrot: Are you up for a trip in the trailer? Where to?

Purple Hull: Yep...I like the trailer and I think the Excursion at 270,000 miles still has plenty of life left. It's at Erin and Shaun's place....we gotta get it back and then I'll put hardwood floors in and we'll take off for a week or so. It's not so much where we're going, it's just the going. Uh, we also should get a dish so we can go a little more rustic and don't have to be in RV parks with folks in blue jumpsuits and velcro close shoes.

(I do love electricity.)

Carrot: Yes, I agree, my brain is a little scattered. Every thought leads to lots more. I still like my idea of going fishing without hooks. Always yours.

Purple Hull: You really think I have writers block?

She's so much more than just tolerable

You see....I was a little self-deprecating, but not towards myself, in my comments of Dad's last post. I said that mom was so much more tolerable on the beach... insinuating that she is intolerable when not atop sand. I owe her an apology. As she is, much more than tolerable. Her comment of my comment did not show the depths of my hurtful comments, as when I talked to her just today, and I tried to weasel out of my comment saying that "i was just self-depriciating... just to you instead of me" she said that was the very definition of mean. And it is. And I'm sorry.
SO.... how do you un-offend your mother? There are yo-mama jokes... which are always funny. YO MAMA SOOOOO FAT (and tolerable), SHE WORE A MALCOLM X SHIRT AND A HELICOPTER LANDED ON HER. Good one. Good one. YO MAMA SOOOO FAT (and tolerable!)... SHE SAT ON A DOLLAR AND CHANGE CAME OUT! Ah ha ha ha. Ok. I'm done. Wait wiat. Sisterbaby did some googling for me... YO MAMA SOOOO SKINNY(and tolerable)SHE HOOLAHOOPS IN A CHEERIO! Ah ha ha ha haha.

So... here's how tolerable my mother is:
She loves my babies as much as I do. She said one time that I'm the most motivated person she knows. She doesn't give me compliments if I don't deserve them; therefore, when she tells me I look good, I really look good. She buys all the Christmas and Birthday presents. We know. She invented Halfy Birthdays, Crazy Suppers, and the Proud of You Song. She didn't buy into me needing hi-top Reeboks in the 4th grade, and I'm apparently better for it. She feeds Dad. She says that if people know you're wearing make-up, then you've got on too much. She told us our whole life that it wasn't about us. Everybody's too worried about themselves to be worried about what you look like. However, when I put my wedding dress on, she was quick to say "Oh,honey, today... It's all about you." She's on my favorites list in my iphone. When something good happens she's on the top three list. When something bad happens, she's on the top three list. She worries about us all the time. But, when she steps into the sand, on any gulf, her worries slip away for a sec, and she runs around with her enviously bird-like legs, pecking around, letting her toes get in the surf, and she doesn't worry. We love seeing her love the beach is what my comment should have said. But it didn't. And now, according to her teachings, I must apologize until I'm asked to stop.
I'm sorry.I'm sorry. I'm sorry. I'm sorry. I'm sorry. I'm sorry. I'm real sorry. Sorry mom. I'm still sorry. Real sorry mom. Sorry I hurt your feelings. I shouldn't have said that mom. That would have hurt my feelings too. Sorry mom. Love you mom. Why do you even tolerate me? Sorry. Sorry mom. Hey mama, I'm sorry.
Sorry. Will a glass of wine fix this? Do you feel better yet? I don't. Sorry mom. I'm real sorry. I'm a shit head. Sorry mama. I won't do that again. It's not nice to not-yourself-depreciate. Sorry. Oh! I'm so sorry! I'm sorry. Sorry mom. I don't want this to start sounding sarcastic, but I really am sorry.

Please accept my public-esque apology.
Erin Amanda

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.