Platelets, and Nosebleeds, and Lumps: OH MY!

William got kicked out of chemo again, today. He was supposed to get his last dose of the easy drug, Gemzar, but he turned out to have so many bizarre new glitches that they said he couldn't have treatment until next week.

First: His Nose (Grossness factor in this paragraph: Very High)

His nose has gone wild, and he has to see a specialist on Monday. (As in some earlier blogs, I warn you that if you are eating or drinking anything red, stop reading NOW.) In Beth Parlance, a nose has "gone wild" when it has begun to emit HUGE amounts of blood (description about to get really gross now) and big blood clots. These are not nosebleeds. This is something different. This is constant vast amounts of blood pouring out of his sinuses so that he has to blow it constantly and nothing comes out but tons of blood. REEEEEEEALLY weird! He is not using nosedrops, so that's not the cause. He rinses his sinuses with gentle saline solution, but it's not getting better. In fact, if he doesn't blow his nose all night, his sinuses fill up, until he completely can't breathe through his nose.

So Monday, he will be seen by a specialist to figure this out.

Second: His New Lump

He has discovered a weird lump on the inside of his left elbow. At first, it was suspected of being a blood clot, but they ruled that out. Now they are going to have to do a sonogram to see what it is.

Finally: Platelets

Nothing new here, but there IS a new treatment. His blood platelets were too low again, so his new treatment is that he has to have a transfusion! Crikey! I asked if I could donate platelets for him. I would love to think he had my platelets in there, helping him fight the good fight. But my platelets would want to watch reruns of Dexter while his would want to watch ESPN, and it would never work. (Real reason is that it would take too long to process my platelets, and he needs them right away).

So some unknown generous soul, somewhere in the lowlands, who, sometime recently, generously donated their platelets to the world at large, will have their platelets shipped up to the mountains in a truck tomorrow and infused into Bill's veins, helping him fight.

I wish that person could know that their platelets went into the sweetest veins in the world. Thank you, anonymous person, who helped save my husband.

I'll write more tomorrow after the transfusion.

Love and Happy New Year and Happy Editing of Last Year's Memories!

Bethie

A Rough Sunday and A Lot of Snow to Dig Out

Hey all. Billy had a terrible, terrible Sunday, but is better today. (I get in such an awful funk when he feels bad.) He was SO queasy, feverish, aching, metal mouthed, and sick feeling.

Uck. You wouldn't have wanted to be here yesterday. Nothing we tried would cheer either one of us up.

And the Packers had to lose by one point, too.

Oh, and I got a split lip when I was kissing one of the dogs with the other dog on my lap, and the one on my lap suddenly popped his head up really fast, unexpectedly, and slammed into my mouth, and there was blood everywhere.

AND all the paper mache creatures I was making yesterday to cheer myself up came out HIDEOUS.

AND the only movie I wanted to watch yesterday was unavailable because of snow on the stupid dish.

Today is much better, though.

But now we have to dig out the 4-wheel-drive SUV so we can slide down the winding mountain roads and try to get to his Neupogen shot by this afternoon. We had TWO FEET of snow, and it's all still out there. And he's not really in a condition to be digging cars out of snow, so really, I should do it.

But it could all be so much worse!

And, this, too, shall pass.

Love!

All the News is Purty Dang Good

(I have a feeling that I slightly annoy some blog readers by not posting more often. I also have a feeling that I slightly annoy some other blog readers by talking about how I annoy the first set of blog readers because I don't post more often. Officially acknowledging, therefore, that I either do or don't annoy some or all blog readers, and my mind having officially shut down trying to figure out what I just wrote, let us begin...)

Billy our Pony Boy had a MUCH better than expected experience this week! HeeeRAYYYY!

After the megatron bomb drips of last week, followed by the two Neupogen shots this week, we thought we were going to end up in a fetal position in a closet somewhere.

But nay.

Bill did feel like something on a shingle for a few days, and his nausea seems to be increasing gradually with every round, and he can't sleep too well, and he can't stand most of his old favorite foods any more, and he can't sip his Glenlivet 21 single malt with pleasure any more (I almost wrote "approbriously" but not sure that was the right word. Sometimes vocabulary words I memorized for the GRE pop into my head of their own accord. Chimerically.), and he's tired all the time, and, after the Neupogen shots, his hips and sternum felt like they had transmogrified into boiling lava lamps, but OTHER THAN THAT, he was fine.

(Transmogrified? Am I drinking too much coffee this morning?)

I actually didn't mean for that paragraph about his negative side effects to be ironic. We both actually are extremely grateful that things were not much worse.

His oncologist gave him a new kind of pain pill (Percocet), because the Vicodins were doing nothing for him, and these Percocets got him through the nights where he previously could only sit up, awake, groaning with pain in his bones.

So, as of today, he is feeling fairly great. As I type this, he is sleeping. We had a whole bunch of fun last night at an Italian restaurant. See how good he is that he could do that? YyyyyAY!

Today, he gets a blood test, and if he's okay, he will get his Gemzar drip (the not-so-bad chemical).

But most of the Gemzar drip days have turned into surprise packages of Go-Home-ness after they look at his blood, so who knows what they'll find in his blood today. Maybe some fettucini and meatballs from last night. Or maybe the cranberry sauce from Thanksgiving is still in there. But I'll let you know!

Wishing you love, light, peace, happiness, and lots and lots of sweet, gooey holiday treats that don't make you gain weight.

Seriously: thank you for your love and prayers and caring.

Beffie Weffie

Finally, All Went Well!

(Sorry this post is late. My blog was down/server down for a while.)

At last, I have NOTHING STRANGE TO REPORT this time! Yay for stuff being regular!

Bill got his Gemzar on Thursday and his Cisplatin on Friday and NOTHING WAS BIZARRE!

Part of the reason is that he has missed a bunch of chemotherapies in a row due to blood problems, so it was something like three weeks since he'd had a dose, and his body finally was able to bounce back and was completely normal.

So we were able to start wrecking it again. Hmmmm. Zat how it's s'posed to go?

WHAT BILL IS HAPPIEST ABOUT

He is the most proud of the fact that he finished the semester of teaching yesterday (last exam given). He said it was one of the hardest things he has ever done, showing up for all those classes throughout the diagnosis of cancer, and the cancer problems at the beginning, and then throughout all the chemotherapy and side effects. He even went to every class when he was instructed not to go anywhere near crowds, and was nauseated, exhausted, in pain, and even bleeding. He had every excuse to stay home, but he showed up and taught.

He's like a war hero! I wish I had a little medal I could give him. Maybe I'll buy him a cowboy badge in the toy section of Walmart, and he can wear that for a while. But all kidding aside, what he did was a magnificent testament to who he really is, and was a truly courageous thing.

And as they say, courage can only exist in the presence of fear. So that's one up side of being afraid. It allows you the chance to demonstrate courage. And Bill truly did.

COMING UP NEXT

Monday and Tuesday he has Neupogen shots. They cause him SEVERE pain during the night, and we're both scared about that. This Sunday night, he will probably have flu symptoms, fever, body aches, nausea. And theoretically, next Thursday, he will get another dose of Gemzar, the not-so-bad drug.

But soon we call the surgeon at Duke and schedule his surgery. It will be in early March. Bill says he is the most afraid of the surgery, more than of any other part of this experience. He said he is worried he won't survive it, since it is 8 hours long, 12 days in the hospital, and he is 66 and it's such a dramatic type of surgery. So I try to help by finding comforting statistics for him and assure him that all the prayers and love are going to see him through.

THANK YOU SO UNBELIEVABLY MUCH for the prayers and notes and cards and emails and home made soup and new laugh-intensive friendships and invitations, and yesterday a certain ANGEL gave us a Poinsettia, to top it all off. You can't BELIEVE how much comfort and joy we get from your love. I mean, it's life changing.

As for me, I'm working hard to keep myself cheerful. Not that easy since I can't walk in the woods or garden in winter. This week, I'm making a bunch of papier mache bad-art-looking creatures and painting them weird colors. I'm calling them Ugly Loveables, and each one has a name. So far, Calvin is a messed-up looking way-too-thin dinosaur who is black with orange and red and green spots and a totally screwed up tail. And Wedgewood is a silver genetic-accident-looking thing with a string tail and big ears. And a couple other little guys who look like they attended a nuclear accident or two. But they make me laugh. That's sayin somethin.

Thank you and thanks especially to God who has blessed us so profoundly through all of you.

Love,
Beth

Kicked Out of Chemo Again

We're home early. Bill's blood test results got him kicked out Chateau Chemo without getting his dose of Gemzar.

THIS time, it was low white cells. Remember when we thought a white cell count of ONE was bad? Now his white cell count is down to point eight.

Bill is instructed to get under the covers and hide for the next week.

Juss kiddin about the covers.

But the point eight is for real. That is incredibly low.

Furthermore, we got to talk to the Oncologist Doctor today about the coagulated blood drama of last week, which occurred while she was on vacation. Let's just say that she was less than impressed by the vast wealth of knowledge I had accumulated doing a day's worth of google research. She said that if there were such a study as showed the results I was explaining, then no one would be getting Gemzar and Cisplatin, so therefore, the study must have been worthless.

After listening to her logic, I had only one question remaining: "HUH?"

But I know when a doctor doesn't like what I'm saying, so I let it drop. Although before I did, I let rip a thoroughly graphic description of what the clots of blood looked like in the syringe so that, just for my peace of mind, I was sure I did get the point across.

So now, nothing will be happening until next week when Bill gets the double whammo doses of both chemicals on Thursday and Friday. After that, he gets daily Neupogen shots, which make his bones hurt so much that he has to remain on pain medicine during those days in order to stand it.

At least we are officially half way finished with chemo now.

On a cheerier note, here's some Tiger Woods humor for the day:

Q: What is the difference between a car and a golf ball?
A: Tiger can drive a golf ball 400 yards.

The head nurse said not to worry

We called the Oncology center this morning, first thing, and explained our thoughts and concerns about Bill's blood. Bill was wondering if he could get his blood retested today.

But the head nurse, with whom Bill spoke, said that there was no need, nothing to worry about, that it happens all the time.

The reason Bill had the impression that it DIDN'T happen all the time was because the nurse who only got a few goopy clumps of his blood out after trying repeatedly said she had never seen anything like it in her entire career.

She is in her fifties.

But we shall bow to the experts, I suppose, and just wait until Thursday when he goes in for Gemzar and will get his blood tested then.

Not that I don't trust the experts absolutely, but ((((((((((halp!)))))))))

Bill feels okay, but the gravy thing is still freakin' us out

I got a large number of requests for updates after the post about Bill's blood turning into liquid paraffin.

So here's a short one.

1. No, we weren't kidding in that last report. Or exaggerating. His blood was in clumps in the syringe. It was NOT runny or liquid.

2. I found a lot about it online (please factor in that a little knowledge is a dangerous thing, and that I am only going by what I THINK the medical reports have been saying, when I've googled into the lingo-intensive articles. In other words, I could be WRONG here).

Turns out that coagulated blood is a rare but well-known side effect of Cisplatin. How it works is like this:

Platelets are things in the blood that nurture the "endothelium." The endothelium is the lining of the arteries. Endothelium is like Teflon and makes the arteries slippery so blood moves through easily. Cisplatin had wiped out a vast amount of Bill's platelets. Therefore, his platelets were not nurturing his endothelium and when that happens, the endothelium gets out of wack and the blood clots. I think they call it a "coagulation cascade" which is a bizarre medical term (BMT), not unlike "exquisite pain" which is another BMT.

So...Bill's platelets having taken a severe hit, his endothelium went rogue, and his blood clotted up.

Is this about as dangerous as looking down the barrel of a Taliban AK-47 while making up fun-poking limericks about men who wear skirts?

Why, yes it is!

So tomorrow we plan to call the oncologists and ask about getting him more attention, and possibly pre-emptive anticoagulant therapy before the next time this strikes. He still has TWO more rounds of Cisplatin in his future.

3. Thanksgiving was hard for our Roy Rogers, though. Everything tasted like metal, and he kept almost throwing up. And there was lots and lots of noisy partying going on day and night because a galaxy of 20-something kids was (were?) here, orbiting everywhere, laughing, squealing, dancing with the pups, cooking weird foods, inventing macaroni and cheese pizza with alfredo sauce on it...oh!... and accusing me of cheating at poker when all i did was whisper to Bill as to whether I should fold with two kings, which I didn't do, thanks to Bill, and which did cause me to win the entire game.

More when the next shoe drops.

Love and thanks for those prayers.

Beth

More Blindsiding Drama for the Buckaroo

So on Wednesday before Thanksgiving, Bill and I drive to the clinic for a simple little Gemzar drip, estimated to take about 15 minutes.

I actually said the following to him on the way there: "Last time we tried this, we ended up sitting there for 7 hours while they used the flipping jaws of life on your kidneys, right? Ha ha ha!. Now THAT was a surprise, but now we're done with surprises," said the foolish, foolish I, then waxing foolisher immediately thereafter by uttering this statement: "There's absolutely NOTHING that can go wrong today, though."

WARNING: IF YOU HAVE A WEAK CONSTITUTION OR ARE EATING ANYTHING RED, LIKE, SAY, CRANBERRY SAUCE AS YOU READ THIS, DO NOT CONTINUE. STEP AWAY FROM THE COMPUTER. PROCEED IMMEDIATELY BACK TO YOUR DINING ROOM TABLE AND READ THIS TOMORROW.

So we sit down and the nurses call Bill's name, and he goes over and sits in the chair to have his blood drawn.

He's there a long, long time (I'm around the corner, can't see him).

Finally, here he comes and sits next to me. He's holding out his arm. It's wrapped up with a series of bandages from his wrist up to his elbow.

"What the heck is that all about?" I say to our cowboy.

"They couldn't get any blood to come out. They tried all different spots but the blood wouldn't come out. Finally they got a tiny bit and sent it to the lab. The nurse said she's never seen this happen before."

"Never seen this? But people have trouble all the time with their veins being hit right to draw blood."

"That wasn't it," he said. (If this were a spooky movie, the music would get really creepy RIGHT NOW.) "The problem is that my blood has coagulated."

"WHAT?!?!?! You mean, in the syringe???"

"No. In my whole body. All my blood has turned to goop. My blood looked like red pudding, and they couldn't get it out, and they've never seen this before."

Well, nothing like an image of THAT sort to relax a wife whose normal level of calm in the BEST of circumstances is along the lines of a bomb squad expert who, while disassembling a nuclear device, encounters the sound of an unexpected balloon pop.

Shortening the story here, it was 4 hours before we got out of there. Bill did NOT get his chemo. The test results came back with such an insane reading of his blood contents that they refused to believe it and wanted to retest him.

But to do THAT, they had to call in the head nurse to try to get enough blood out.

Not only could this nurse not get the blood out, but they had to attach an extra suction device to the syringe to try to FORCE some blood out, and when the blood came out...I am not exaggerating, now...it was completely congealed!

Jello. Heinz ketchup. Cranberry sauce. Cherry pie filling.

His blood was not liquid! It was gravy!

I was completely horrified.

The nurses were trying to act calm, and say assuring things--they're wonderful about that--but. I mean. WHAT WAS GOING ON?

So they got about 1/10th of a syringe full and gave up, and sent it to the lab marked *ASAP*.

It came back and showed that Bill's body was no longer running on blood but had become a Toyota Prius fueled solely by restaurant grease.

Okay, seriously, though, it showed that his blood was pretty much guano on a shingle.

So they sent him home.

Home?

I kind of thought that wouldn't have been my first move.

I was thinking more like the intensive care unit until his blood was actually liquid again.

And I never should have googled this when we did get home, because after what I found out about blood congealing during chemo, we're both sitting here in a panic, with the thermostat turned up to 110 degrees lest the air temperature fall too low and his blood solidify into one giant cinammon candle.

Or a lifetime supply of cranberry sauce.

Happy Thanksgiving!

Toxic Kidney Man

Our favorite cowboy has toxic kidneys now.

Nephrotoxicity.

Well, technically, I guess his kidneys can't be said to be toxic, themSELVES, or that would make them poisonous. But I thought if I said his kidneys are intoxicated, you might think he drank too much alcohol.

Hmmmm. In a way, that could be true, only it wasn't alcohol and he didn't drink it--it was cisplatin and it came in through his elbow artery. (Beatle song: It CAME in through his elbow artery...)

Wow. I need to be more awake when I write these things.

Anyway, yesterday, he went to get a simple dose of Gemzar, the humble chemo that takes a half hour to drip and causes no problems.

Hold it. Back up. This week held thrills even BEFORE he went in for the Gemzar.

If you remember, the last time he got Cisplatin--Drug From the Ninth Circle of Hell--it wiped his white cells down to a nice simple "ONE".

So this time, they started giving him Neupogen shots in the arm every day after he got the Cisplatin.

Neupogen can be considered a friend. But it is a friend that you hope you never ever meet. Neupogen does to your bone marrow what a strawberry pop tart does to a toaster if you hold it down, which is to set everything on fire and then explode.

So this week, Tuesday night, Bill's bone marrow caught on fire and exploded. Metaphorically. He woke up in childbirth. Metaphorically. And as most people know, childbirth is an experience that would very closely match the definition of an exorcism.

It was like that.

He was literally yelling with pain. His pelvic bones felt, he said, like molotov cocktails gone wild, and the pain was radiating around and around his abdomen.

That first yelp will do a number on a spouse who is sound asleep beside you.

I now officially have post traumatic stress disorder.

But that's another day's topic. ;)

So we got him through that by 5 am, using only tylenol.

And today (Friday), he gets ANOTHER one of those shots.

Luckily, I recently purchased some ear protection that is suitable for a firing range. So I should be okay. Our dogs, however, may end up walking around with incurable shakes and x's where their eyes are supposed to be.

Beth. Bring it back. You've drifted too far from the shore, girl.

Okay. Ahem. Back to yesterday's Gemzar drama.

So yesterday, he gets his routine little blood test before the Gemzar. The results comes back like this: UH OH.

His kidneys have taken a major hit. His blood sugar is in the pre-diabetic range, his white cells are so numerous that they are plotting to overthrow New York City, and his red cells have run for cover, rendering him horribly anemic, so he can't get enough oxygen in through his lungs.

He said he will never again utter the phrase, "What doesn't kill you makes you stronger." Because the way chemo works is, what can make you stronger can also kill you.

SO.

Yesterday involved SEVEN HOURS in the chair getting salt water pumped in and in and in and into his body to try to repair his kidney damage.

I asked the nurse for a printout of his blood test results so i could Google them. Turns out his kidneys aren't processing the urine OR the protein, so it's a double whammy (completely whacked BUN and Creatinine scores for those of you who know this stuff).

You can see how it is for US, now, in perceiving his illness. The cancer seems like a mere distant thought. The chemotherapy becomes the disease.

As for me, I'm just happily stressed out, whacked out, stunned, sad, scared, and wandering around this whole bizarre situation like Odysseus on the wine-dark sea, missing the days of Troy and hoping I bump into Ithaca sometime soon.

Thank you for your prayers, thoughts, and light.

Bethica

Cowboy Bill's Photo Shoot (Hat Pix) Tomorrow

Bill is feeling...um...okay...

Actual dialog.

"Bill! How do you feel?"

"Weak and shaky. An overwhelming metallic taste in my mouth."

"Do you want to dictate anything else I can tell your pals?"

"No I do not. Oh, wait. Green Bay just won. You can tell them that."

"Bill: What symptoms do you have?"

"I feel feverish, but I'm not. Metallic taste. Weak and shaky. That's all I got for you!"

"Man, can't you say something funny?"

"Green Bay beat Dallas."

"You are a dud."

"Okay. Here: After this spring I want to be known as Bladderless Bill."

Wow. Sorry, peeps. That's all he will say.

You can lead a Packer fan to a blog, but you can't make him something something.

Okay, I wasn't sure how to finish that sentence, so I asked Bill.

"Bill. What word could I put there? 'You can lead a Packer fan to a blog but you can't make him' WHAT?"

"Punt. You can't make him punt."

"PUNT? That makes sense? You can't make him PUNT? People will get that? No one will get that. I'm going to write down that you suggested that but I'm going to indicate that I wasn't really behind it."

Done.

Beth



Her Bethness

Short update: bigger update tonight

Mister Bill got his Gentle Gemzar yesterday (Thursday) and is having no effects yet, thank heaven. But in two hours, today (Friday), he starts the Kaiser Wilhelm Gustav Gun Weapon of Chemo, the Cancer Killing Death Star to tumor cells: Cisplatin.

He is in major dread.

Now that he knows the following about Cisplatin, I can post it (I don't post things he doesn't know, to avoid freaking him out): This drug is so toxic that he needs three hours of saline solution (salt water) pumped through his body before they'll even give him the drug. That part you knew, but here's more: It's so vicious that if a few drops were to leak out on his arm, they would chemically burn right through the skin and leave a thick, permanent scar!

The preceding paragraph was to satisfy the sensibilities of any individuals who may feel that my blog entries are too happy and frivolous, given the gravitas of the subject matter.

But on to lighter fare!

I'm going to take a camera and take pictures of Billybob in chemo wigs for you.

Well, maybe we'll have to hide in a conference room to do that, as even I, Madame Inappropriately Silly, wouldn't want to make any one nearby feel uncomfortable, since wigs are actually NOT a funny subject.

But BILL in a wig IS a funny subject only because he never had hair in the first place, so to start wearing a wig during chemo....oh, Beth, let it go...they GET it, already!

Later, taters! I'll write again tonight.

Love,

Beth

Cowboy Billy back in the saddle tomorrow

Cowboy Billy starts chemo round #2 tomorrow, Nov. 12 (Thurs).

Thursday's chemo has no noticeable ill effects on him.

Friday's chemo, however, is Genuine Military-Issue Montana Whoopass.

Hold on to your pony, Billy Bob! Everybody loves you!

Bill finishes his "resting week" and prepares for the November battles

Is it frustrating to come here and find no new posts? If so, I could put up something short every day. Bill can tell you that I have NO problem generating words.

And we haven't even gotten into the posting of photos.

Wouldn't it be fun to see Bill in that David Bowie wig?

Anyway....oh, and about knowing when a new post is up without checking manually--if you click "Follow" on the right-hand side of this blog, all that will happen will be that you'll get a notice in your email whenever a new blog is posted.

Okay, so, the update:

Bill is completely normal right now, although still being careful to avoid sicknesses. This is his week #4, of round #1 of chemo, during which he rests.

This coming Thursday, he gets the November motherload in his arm: Gemzar on Thursday, and the dreaded Cisplatin on Friday.

By Saturday, the inside of his bladder is going to look like the movie set for Predator v. Alien. Transitional Cell Tumors pleading for their worthless lives, Carcinoma In Situ Patches swearing they'll never do it again if we'll only have mercy.

But no mercy shall be found!

And in a completely non-linear thought line: Another up-side to chemotherapy has been identified:

THE HANDICAP PARKING PASS

Ohhhhhhhhhhhh, heck yeah! Bill has a 6-month pass for handicappuccino parking, and we are loving it! He can now park outside the door where he teaches, instead of a half-mile away. It's really helpful when he is queasy and out of breath.

In closing, I will show you a clip from an email he wrote to his pal of 50 years, JG, which email comprises Williamic variations on the theme of handicap parking passes:

"Re: handicap pass. One, they rule. Two, how about a *golf* handicap pass, whereby any player who achieves the age of sixty-five and who is hobbled in any way is automatically considered scratch. A score of 125, say, is considered par. And the Senior Tour has to take you on and you play from the red tees with limitless mulligans from said tees and limitless "do-overs" from the fairways and greens.

"I'm getting excited about this proposal. (Not excited enough to get out of bed, mind you, but excited nonetheless.)

Bill"

Love and Light,
Beth

Everything Went Well on Thursday. (Except the World Series.)

Bill had his blood test Thursday morning, and his body had heroically recovered to a completely normal blood count.

So he got to have a little blue doo-dad stuck in his left arm and taped in place, and they squirted a variety of beverages into it. He got saline solution, anti-nausea stuff, steroids, some other stuff, and then some other stuff, and finally the Gemzar (gemcitabine). That's the chemical that is the gentle one that doesn't bother him.

Though his hair is thinning. And that's SAYING something.

I was looking at the wig collection they have, and I found a David Bowie one that I thought would look good on him. Brown and blonde, short (brown) around the bottom, and on top, sticking up 5 inches, real thick and blonde and punk rock looking.

I dared him to tell the nurse he wanted to try it on, and then to wear it all during chemo and see if she would keep a straight face. He told me those nurses are probably trained never to laugh at the wig selections people make. I said I wanted a job that involved training nurses not to laugh at bad wig choices. Dude. If there really is a job like that, I actually do want it.

Then I told him that maybe it would be easier to just take 5 barbie doll heads--the kind with long blonde hair--and glue them onto the top of his head in a line from front to back, creating a blonde mohawk effect. This suggestion he seriously did consider.

Yesterday, he had such a hilarious character getting chemo and sitting next to him. It was an older fellow, around 80, in jeans and work boots and a checkered flannel shirt. He said he's lived up in the mountains all his life--calls himself a true hillbilly. The accents on the locals here are just fabulous.

This guy had everyone on our side of the Chemo room laughing so hard telling stories in that gorgeous and rarely heard accent. One of the things he said was that he was proud to say that in his entire life, he had never once hit a woman.

The nurse replied, "That's because you're a smart man."

He said, "Wail, truth ee-uhz, ah awlmos dee-id hit a womun wuntzt. Ah was a-standin in a parkin lot, and this-yer womun was a-fahtin' [fighting] wiff her boyfreeund, and she got maddern da dickens at 'im, and 'stedda hittin' HEE-UM, for sum reezun, she decided she'd juss take it out on me an walked up 'n slapped the livin' far [fire] outta me. I dun took off runnin after that womun, an iffn I'da cawt her, I'm sure I'da hit her. Heck, if I'da founda rock, I'da frowed it. Good thang for me, there warnt no rocks, and she was fastern I was."

........

The night before, I was reading this novel in which an old man says to a young man: "Here's the secret of life, and I'm going to tell you, but you're not going to understand it for a long, long time, till you're much older. Ready? Here it is: Everybody is Christ. And everybody is crucified."

If that's true, and I'm not saying it is, but if it's even KIND of true, then that might explain why something deep and mysterious and strangely beautiful always seems to be visible when Bill is at chemo and when all the fellow sufferers there are having conversations with each other. While they are each in some degree facing the danger of death, nonetheless, at a time like that, they want to make some kind of contact with the co-sufferers beside them.

Was there a little of that going on between the thief on the cross and Jesus?

I don't know, but maybe it was something like that.

Bill's prayers--WRONG kinda prayers--answered!

Apparently, every bladder has a silver lining.

In this case, the silver lining for Billy Bob is called "The Neutropenic Diet"--and Bill just can't stop snickering with delight about what it requires him to eat.

I'm, well, having difficulty believing there is a diet like this for sick people.

Brief informatory digression:
A neutropenic diet (nu-tro-PEE-nik) is for people with weak immune systems, like Bill's. The diet protects them from bacteria and other harmful organisms found in food and drinks. An immunity-compromised body, like Bill's, can't protect itself from bacteria, so on the days he is neutropenic, he needs a special diet to keep him from being exposed to the many, many things that can get into your body through food.

When he first printed the diet out and started reading it, I could hear him laughing his head off in the back room.

"What in the WORLD is so funny?" I asked him.

"This diet. It's the greatest diet ever known to humankind. There really is a God."

Then he proceeded to read me his favorite sections from the diet. I had to look at it myself to make sure he wasn't tricking me, to get me to stop feeding him all the extreme-health foods I was shoving his way: things like organic, triple virgin, hydroponic, vegan prunes and yogurt and korean cabbage. Grown by contemplative monks in Asia. Well, that's a slight exaggeration, but not much.

He starts off reading me THIS from his neutropenic diet:

"Avoid all fresh fruits and vegetables. Choose donuts, sweet rolls, waffles, French toast, potato chips."

"WHAT?" I howled. "It couldn't possibly SAY that! Gimme that!"

He reads on:

"Avoid salad bars, fruit bars, raw nuts, and all yogurt. Choose chocolate milk, Velveeta cheese, cakes, pies, cookies, commercial ice cream, butter, mayonnaise, jelly, syrup, hot dogs, bacon, sausage..."

"NO! WAY!"

"Way!" he yells back. "I can't eat any foods that might arrive in our kitchen with bacteria on them. I can only eat processed foods, frozen foods, pre-packaged foods. No more raw broccoli! No more raw carrots! No more Jerusalem artichokes!"

Oh. My. Gosh. I looked at the diet and he was right.

Well.

I am still trying to bend my mind around this, but it does make a bizarre kind of sense. Although, WHAT!? He is now eating exactly the kinds of foods I have scolded him for, for lo these many years, and he is doing so with an oncological nutritionist's imprimatur.

There is no justice in this world.

Well, in mine, anyway.

There's plenty in his.

And his tastes like Jimmy Dean frozen egg-cheese-sausage biscuits with jelly toast and donuts for breakfast.

Mine tastes like prunes and yogurt and korean cabbage.

Big scare: Sunday night, Oct. 20-something

Remembering that the oncologist had told us that if Bill were to get a fever of 100.4, he was to take a mega-antibiotic and go immediately to the ER, you can imagine my panic when, last night (Sunday evening), Bill suddenly started to feel extra bad, and his fever started to rise.

Up it went from the 98s into the 99s...99.2...99.3...99.4...99.6 (Those little dots represent me shoving our new electronic thermometer into Bill's mouth every few minutes in a non-calm fashion.)

Normally, who would even CARE if someone's temperature were that minor?

No one.

Unless they were Beth, who had suddenly begun googling the subject at warp speed, reading every scientific journal article on why the magic number 100.4 is such a big dangerous deal for people who have compromised immune systems.

Okay, now here's what I learned and why I freaked out and started shaking for an entire hour while his fever rose--well, actually THREE things were happening during that dramatic hour: (1) his fever was rising; (2) I was googling "100.4 + chemotherapy" at the speed of light; and (3) when my left hand wasn't typing, it was shoving that thermometer into Bill's protesting face.

So here are some of the phrases that were showing up in every article I was finding:

o LIFE-THREATENING EMERGENCY! (Exclamation point was included)(!)
o THE PATIENT COULD DIE IN A MATTER OF HOURS
o 100.4: RUSH PATIENT TO EMERGENCY ROOM AND BEGIN INTRAVENOUS ANTIBIOTICS
o NORMAL BACTERIA IN PATIENT'S BODY BEGINS TO COLONIZE
o ORGANS SHUT DOWN QUICKLY

KAHHHHHHHHHHHHHHHHHHHHHHH-RAPPPPPPPPPPPPPPPPPPPPPPP!

Okay, that word wasn't in the medical journals.

Now the dilemma was this: Bill, who has chosen the Path of the Golden Ostrich (head-in-sand approach to cancer), did not KNOW that once the fever hits 100.4, it becomes life-threatening for persons who have very low blood counts. I'm sure his count of "one" was especially dangerous.

So there I was, freaking out with my hands shaking, watching that thermometer, and HE couldn't understand why I wouldn't just relax, turn off the computer, let his fever play itself out, and let him watch his TV show about a serial killer who kills serial killers.

Maybe there's some irony in there, but I can't find it.

So I felt really isolated, having all this information, not able to tell him, and being so scared. So I emailed Sarah and JP (two of my kids who are in NYC together, playing concerts).

Here's the cool part:

Unknown to me, Sarah, having read my email about the emergency, immediately texted her most devout Christian friends, JW on the east coast, and EB on the west coast, and her brother, my son JP, who was at a concert. JW then texted his dad, who's a pastor, and emergency-texted a group of prayer warriors through his church. EB texted his family and his dad who, himself, is going through chemo. This entire group started praying a sudden emergency type prayer.

Remember now, we didn't know about that prayer thing.

At that moment, Bill's fever, just before hitting 100, reversed.

It started going down, down, down--for no reason that we could see.

It stopped when it hit 98.6. EXACTLY 98.6. And the crisis was over.

Whoa.

I mean.

KINDA looks like the Big Guy did us quite the favor.

Yeah.

You tell me.

I'm just sayin...

Uh-oh: They had to stop chemotherapy for Bill

Bill got his blood tested before starting chemo today, and the results were so bad that chemo had to be stopped!

The doctor told him that his blood count was only "one."

ONE?

You can have a blood count of just ONE?

One WHAT?

One white cell?

HALP!

I'm trying to find this out. So far, I think his condition is called "leukopenia" or "neutropenia." It's a fairly common side effect of chemo, although I suspect that a count of "one" doesn't happen every day.

For the next 4 days, he will be extremely subject to infections--both bacterial and viral. He has to wear a mask everywhere he goes, and cannot go in public places or anywhere there are children. He isn't even allowed to receive the H1N1 vaccine because his immune system is so shamwowed that he would GET H1N1 if they gave him the vaccine! YIKES!

We have to take special care in the house to make sure he doesn't get infected. He cannot get scratched, and I have to overcook his eggs and meats, and make sure vegetables are super-clean (I do that, anyway. Lord. I'm so obsessive that I wash the OUTSIDE of BANANAS before I eat them, so no new practices required there.)

As long as I don't have to vacuum.

WHAT? I have to VACUUM?

Meanwhile, the other bad news is that this means he cannot receive any more chemo until that blood situation corrects itself, and the next time he gets cisplatin, he can't have a full dose.

And they never make up the dose he missed today. He just never gets that dose.

Next Thursday, we'll try again.

[Note to self: Mark off the to-do list of Life Experiences: Getting kicked out of a chemotherapy center. Done.]

Team-O-Therapy: Phillies go to the World Series

Better than Gemcitabine and Cisplatin: Bill's lifetime favorite team made it to the World Series in last night's game. Happy place, here. No illness, either. Just tiredness.

Bill even TAUGHT yesterday! Sitting down, yes, but still. I hope at least some of his students realized that was fairly heroic, in the classic sense of the word.

Getting Gemcitabine in the hand this morning at 9:45. Not expecting bad effects from that, either.

By the way, Gemcitabine's other name is "Gemzar."

Doesn't Obama have one of those?

Tuesday, and the boy is pretty darned good!

It's Tuesday afternoon, and this brief little post is just to cheer up the team.

Bill is MUCH better. No nausea, no specific pain, good mood. Quite hungry, in fact!

He just feels very tired and has to get a lot of sleep and a few naps.

As I write this, he's grading papers on the sun porch and plans to go back to teaching tomorrow afternoon. His next chemo is the day after that (this Thursday).

Here is how big our thanks are for your caring and praying and thinking and beaming and wishing good things for him: (I had to google "biggest thing in the universe" to find this.)Our thanks are as big as a massive black hole, which, according to scientists at the Harvard-Smithsonian Center for Astrophysics and the European Southern Observatory, Chile, is "equal to fifty billion suns; that's 100 000 000 000 000 000 000 000 000 000 000 000 000 000 kg, otherwise known as 'ridiculously stupidly big.' "

[The website actually said, "ridiculously stupidly big" even though you might've thought I said it, because it sounds like something I would say. AND it was the website that missed the comma between "ridiculously" and "stupidly" -- not moi.]

Ridiculous and stupid amounts of love and thanks to all,
Beth

P.S. Did I say he wasn't nauseated?

Correction.

Yep.

Now that, too.

Right about here, I'd insert a painting by Edvard Munch.

Uh-oh. (Monday morning update...)

[Sound of other shoe falling...]

Well, of course the bliss couldn't last. Not that it won't come back, but it was definitely waving bye-bye by the end of the weekend.

They prepared us to expect that days 2 through 4 would be a wild ride. But Bill and I were counting wrong. We counted from Thursday, the Gemcitabine/Gemzar day. We SHOULD have counted from Friday, the Cisplatin day. And Saturday was then day number 1.

Okay, so day 2 was Sunday, and some troubles began.

Bill started feeling bad all over. He had some abdominal pain and other things going wrong in various areas. He never DID get nauseated, which was his main fear, so thank heaven for that!

But by the end of the early evening, he had a fever and body aches and couldn't even lie on the sofa and watch his beloved Phillies play baseball.

So you KNOW he felt bad.

I piled up 5 quilts on his bed (he would tell me that I should have spelled out the number "5" because it takes fewer than [not LESS than] two words to write out, but I'm cheating on the grammar, cuz he ain't lookin.)

After the 5/five quilts were piled up, he STILL felt shivery and needed to wear his sweatshirt with the hood on.

He DID laugh when Midas Mulligan, our Boston Terrier, got excited by all the covers and pounced onto the bed, dug a big crater shape into the covers and plopped down for a warm night beside Bill.

By 4 am, Bill's fever broke, and he felt better, but still like a medium-sized Godzilla had knocked the starch out of him.

He's sleeping right now.

Well, I guess it's going to be like the weather--not whole DAYS of good or bad, but rather TIMES of good and bad.

"To everything, turn, turn, turn...."

Prayer + prayer + prayer = Little Miracle?

It's Saturday night, and Bill has NO side effects!

I can hardly believe this!

He had a brief problem, from 4 am until about noon. He was nauseated and felt like he was run over by a bus. But he took some special medication from the cancer center people, and suddenly--nothing!

He drank lots of ginger ale today and ate a nice supper and even had a little ice cream for dessert. He feels completely fine. Cheerful and talkative.

HOW IS THIS POSSIBLE?

I am elated beyond all description.

Maybe tomorrow won't be so great. Maybe it will. But I'm so completely happy JUST for today!

Honestly. It seems like an actual miracle. This is NOT what we were told to expect!

WHEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!

Thank you, thank you, thank you, thank you for the prayers and thoughts and light and love and energy that you sent to Bill.

At least for today, it worked.

An inside look at the comical emails Bill is getting...

In case you wonder why we tend toward silliness in writing some of these blog entries, I wish to point out that it's not entirely our fault. We receive some really funny emails from nutball friends of ours, and that reality has a sort of ineluctable influence.

Here's an example to cheer you up. This is an email Bill read as he sat in Club Chemo on his first day. His reply follows.


A somber attitude, you will note, is not one of our strengths.
------------------------------------------------

SUBJECT LINE FROM J.W.:
"These cheese curds are whey far out, man..."

Oct 15 (2 days ago)

J.W. to William, me

Dear Bill:

Sorry for the subject line...I couldn't think of anything more lucid to write...

I know today is the big day; the beginning of the oh so wonderful chemo phase. I just wanted to drop in and say hello and/or howdy, and let you both know that we (M--, myself, our devotional/prayer group here at the office, my parents, my sister and bro-in law, our church, my stuffed Capt. Caveman action figure, my imaginary friend Zoozle the albino outlaw Sherpa, the GOP, the Daughters of the Confederacy, the 1996 Ashe Central graduating class MADD chapter, etc.) are praying for, and thinking about you ceaselessly.

I hope everything goes well today, and trust that you'll soldier through this just fine. If you need anything, I'm just down the road. I'm not much of a butcher, baker or candlestick maker, but I can stop by the store with the best of them. I'm about to give my yard a final mowing for this year before all the leaves get down. Do you guys need any mowing/trimming done before cold weather?

As we say in the "hood", holla atcha boy!

Hugs, moonwalks and the occasional pop n' lock,
J----
-----------------------------------------------------

BILL'S REPLY:


Dear J----,

I'm actually receiving chemo RIGHT NOW as I (briefly) respond; they have wi-fi at the cancer clinic. Cool.

So far, I haven't developed elongated canine teeth or rampant facial and body hair, which I was kinda counting on; Halloween's coming. Oh, well.

Thanks so much for your own prayers and those you have solicited from your posse.

Glad to see that the local MADD group is involved. Beth's substance-use-prone ex-husband once formed a group in Florida called DAMM -- "Drunks Against Mad Mothers." Don't know if it caught on.

I know what you mean by small-town NC "hoods." I hang out with one in Blowing Rock; basically old white guys like me; we do stuff like tag the dumpster back behind the Scotchman convenience store, mostly with AARP slogans... I may need you to send me some spray paint from Ashe County; the local fuzz is getting suspicious.

Hug M-- for both of us. And seriously, thanks for the prayers!

All love to you and yours,
Bill

After chemical number two: Bill is still feeling fine...

I, personally, am waiting for the other proverbial shoe to drop, but until it does, I can say that, to our unspeakable joy, Bill is feeling absolutely perfect, still.

And it's already almost 9 pm, Friday night!

We were at the chemo clinic (receiving the Cluster Bomb, Cisplatin) until about 3 pm today, and Bill endured receiving more liquids through his arm than Katrina gave New Orleans, or so it seemed.

And now, we keep waiting for a Bill-as-Sigourney-Weaver scene (they actually told us that, this weekend, Bill could feel so bad that he will think for sure that "an alien is about to bust out of his chest.")

Lordie! I could've maybe done without THAT particular image!

But so far, nothing.

And yet, we gloateth NOT.

It can all come upon us like a Stealth bomber.

Any time this weekend.

Tick-tock.

Tick-tock.

This is why I don't watch horror movies.

But mixing metaphors doesn't really bother me much, as you can see.

I'll write again tomorrow.

Unless the alien pops out of Bill's chest, bites me, and I suddenly can't type because I morph into a hairy eel with fangs.

All kidding aside, our God is an awesome God, and, wow, He shows up in the most unpredictable ways.

Love to you all, and unspeakable thanks for your thoughts, prayers, and love to us.

Beth

First chemo: Check that off our life experiences list.

Bill is sleeping right now, so I might have to cut this short, but wanted to report that the first experience of having chemotherapy is now officially over!

So far, the side effects have not kicked in, but we were warned that those could happen any time from now until a couple of days from now, so we are waiting.

He only had ONE of his chemicals today: Gemcitabine--the gentler of the two.

He has to go back tomorrow for most of the day (about 11 am until about 4 pm) and will receive BOTH chemicals at once--Gemcitabine and Cisplatin. The Cisplatin is the sledgehammer drug, and he has to be ready for ANYTHING once that is pumped into his arm.

They gave him 3 different medicines to prevent nausea. He takes them every 6 hours. So far, no nausea at all.

[At this point, he woke up and was hungry for tuna casserole, so I made that for him, and he has now eaten it with no ill effects. Yay! He is lying on the sofa in the living room, watching baseball. Life still seems normal.]

Tomorrow, I'll write more about what it's like to actually have chemotherapy put into yourself.

So far, it's pretty much indistinguishable from sitting in an airport waiting for your plane, except that you're not anywhere near an airport, and you're not waiting for a plane, and you're not in an airport chair, but rather in a big blue recliner chair and you have a tube running out of the back of your hand, and that tube is connected to a metal pole that has bags of cold, colorless, clear stuff hanging from them, which is dripping down the tube into your hand, exterminating cancer cells in your body, left and right, and there are nurses everywhere being really sweet to you, and you're in a hospital, and there are lots of other people with cancer near you, of all ages, and they are also connected to tubes and poles, and at the end of the day, you don't get on a plane.

But in every other way, yeah, it's EXACTLY like sitting in an airport waiting for a plane.

;)

Tomorrow: chemo? YIKES!

Theoretically, tomorrow, Thursday, Oct. 15th, Bill will get his first chemo injection.

YIKES!

I've read everything in English on the subject (specific to his chemicals--gemcitabine and cisplatin), and it turns out that the most comforting page was from a website in Wales, which pretty much says that he will have NO side effects. The least comforting was from a website in Pennsylvania, which made it sound pretty much like one part Armageddon, one part Apocalypse, served over ice with a lemon twist.

HEPPP ME JEEEEEEZUS!

Either way, I will be posting a big report tomorrow night.

Meanwhile, THANK YOU beyond all measure for your emails, thoughts, prayers, and CARDS! And in some cases, wickedly decadent chocolate treats: you know who you are.

I wanted to write back thank you notes for each card, because each one is so precious, but Bill said I shouldn't. Well...just KNOW you are thanked with all our hearts! YOU know who YOU are, too. :)

For tonight, I just wanted to post a clip from an email Bill sent to H.F., in San Francisco, his dear friend from childhood.

Naturally, I have failed to get Bill's permission to post this clip, but... I'll go with the theory that it's easier to get forgiveness than permission, so I'm posting it without his OK.

Oh, he WOULD have okayed it, I'm pretty sure.

It's just so beautiful, and so very, very Bill. If this doesn't remind you of why Bill is the most spectacular person in the world, then my name is....um....King Lear.

Here is what he wrote. [When he refers to "the book", he means the book he wrote, which is now on Amazon's Kindle, and also being read on Wisconsin Public Radio every day in their chapter-a-day program, of which Bill is understandably very proud]:

"Turns out, alas, that the book is doing better than I am just now. Long story short, I was diagnosed with advanced bladder cancer in August. Already had one operation at Duke; I start four months of chemo tomorrow in Boone (the Jack Nicholson character in _The Bucket List_ has a great line as he goes through chemo: "Somewhere, some lucky guy is having a heart attack.") Then an eight-hour (?!) operation at Duke next spring or thereabouts. Followed, if need be, by more chemo.

"So a certain pall has been cast on the household, as you might guess...

"The plan long-term is to remain vertical for years to come. We'll see. Meanwhile, old friendships have taken on an enhanced, even immeasurable, value. Kind of a stimulus package, I guess.

"Blessings on you and yours, Bill"

It's Friday, Oct. 9th, and Bill's chemo got moved up!

The really nice people at the Seby Jones Cancer Center in Boone kept track of our wish that chemo could start sooner, and--voila!--an opening occurred for Oct. 15th--this coming Thursday, so they let us have the slot. Therefore, our Willy will meet with the oncologist there on the 15th and, theoretically, start the whole shebang just six days from now.

Found out that the second of his chemo-juices (cisplatin) is made of platinum--hence the "platin" part of the name. Nice to live in the 21st century when meds are made with the finest gold. I imagine that a few hundred years ago, the only chemotherapy people could get was cissilver, and before that, maybe only ciscopper or cisiron. And in the 14th century, shoot, it was probably ciswood or cisgravel or you were on your own.

I guess it's kind of weird to be happy about getting chemo--happy about something that might make Bill feel miserable. Maybe with cancer, there are concentric circles of happiness/unhappiness, like rings around Jupiter. If so, ours is the ring of HAPPINESS that's inside the ring of UNhappiness that results from knowing he needs chemo at all. UNhappy about needing chemo, while HAPPY to get it, while UNhappy about its short-term effects, while HAPPY about its long-term effects.

Um, what?

Bill's mood is the best it's been since the whole safari began. He's feeling much better as he recovers from the bladder scraping event, and he's delighted at getting emails and cards and wonderful attentions from you guys.

His only down side right now is that he is having some weird pains in his bladder AND in an area NEAR his bladder--and of course, I'm freaking out at every little thing that's NEW--hypochondriac (major understatement) that I am.

He's even trying to eat healthy, immune-boosting foods. Our dear friend, D., passed on some tips for chemotherapy health, including suggestions from some Russian scientists we know, involving drinking something called "nettle tea" during chemo. And...all kidding aside... eating beets. (If you remember the beet humor from a couple of weeks ago.)

He's also currently in love with eating grilled talapia with cheese grits. Okay, at least there is fish involved, instead of mushroom-swiss 1/3-pound Angus Burgers.

I'm also dosing him with green tea, bacteria-laden yogurt, probiotic capsules, vegetables, honey, lemons, garlic, beans, soups, and--his most detested item: fruit. And vitamins like D and folic acid. We had to stop taking selenium. Did you know selenium is a NEUROTOXIN? His urologist told us that. Kwap!

That's it for today. I think there will be a lot more posting once the chemo begins and we see how he does with it. (He got a cookbook today, with recipes organized by side effects. Oh, what a long, strange trip it shall be.)

Eeeeek.

Thank you for your prayers and wishes. God is making His presence known every day.

Seriously.

Love, Beth

When the BLIP is Bill's chemo gonna start????

Wow, the wheels of medical care grind slowly.

After a convoluted lift-off into the world of setting up chemotherapy, we learn that the soonest we can start chemo is OCTOBER 20TH! What the HEY!????????

I am shaking my head.

It seems to ME like if someone had UBER-INVASIVE, UBER-AGGRESSIVE, UBER-ADVANCED cancer--that's C-A-N-C-E-R!!!!!!!!!!!!!!!--the chemotherapy would have started LAST WEEK!

But nooooooooooooooo.

Everyone is very laid back about this.

Everyone except ME, and Mister J.G., Bill's friend from 8th grade, who, along with me, is approaching SHOCK levels that Bill's treatment is STILL not happening!

At the opposite end of the A.S. (Anxiety Spectrum), Bill, Mister Ostrich Incarnate, is thrilled about this.

He can pretend like everything is normal for another--what?--two weeks??????--and teach his beloved college classes, and avoid those side effects, and silly nausea, and silly fatigue, and silly immune issues, and silly et cetera, et cetera.

Well, there you go.

And we're not even in the Canadian or British health care system, where, if you need emergency life-saving now-or-never treatment, you are lucky if it happens sometime before the next Ice Age strikes Hell!

Wahhhhhhhhhhh!

Well, just for the record, I'd have driven to Duke and got this mother started about 15 minutes after we found out we needed it. But Young William gets to make the final calls on these things.

So October 20th.

Till then, you can believe I am fattening the boy up, and shoving green tea, probiotics, vegetables, yogurt, and chicken soup down his throat. We even ordered a cookbook: How to Cook for Your Chemo Patient. Oy.

Thank you with all our hearts for reading this and caring about Lil William, despite his Ostrichian tendencies.

BTW, I thought this blog would be best if I didn't update very often, but I've gotten some comments that people would like updates more often. I could EASILY write a little something every day about what's going on, but was afraid of boring you. If you have a preference, let us know. We accommodate! :)

Love and light and kisses to all!

Bill: On His Medical Condition

Bill, after initially pondering all the bad news he suddenly got from his urologist:

"Wow! What just happened?!?! Last thing I knew, I was enjoying the play with Mrs. Lincoln, and then BAM!"

(this little humor break brought to you by Conan O'Brien, author of the above quote.)

Oct 1, 2009: Bill's treatment plan

Again, thank you with all our hearts for caring enough to check here! We are so touched that you care.

We got home this afternoon from the big meeting with our Urological Oncologist Dr. Walther at Duke University. We got the results from the transurethral bladder tumor resection and the pathology report, from last weeks' surgery. We are very happy with the speed at which Dr. Walthers has kept things moving.

Okay, so...

Bill has the most invasive and the most aggressive form of transitional cell carcinoma and carcinoma in situ--all highly aggressive/invasive, and many of them all over his bladder. "Life threatening, high potential of having spread as micrometastasis (metastasis which doesn't show up right away on x-ray), not a trivial situation," said Dr. Walther, according to my notes.

He will have to have FOUR MONTHS of chemotherapy in Boone before they will even do the surgery to take out his bladder. Click this different-colored text if you want to see a page that carefully explains what his chemo will be like.

The schedule is tentatively something like this: starting as soon as humanly possible, like next week, Bill begins 4 one-month chemotherapy sessions. Between each session, they test him until his blood returns to normal, then begin the next session. This could cause delays.

After the four-or-so months, he gets one month of rest, to strengthen his body for surgery.

Then sometime in March or thereafter, whenever his body is ready, he gets the whole shebang's worth of tests again to see if any cancer is still in there, then he goes into surgery for a "radical cystectomy."

That surgery takes EIGHT HOURS, [Hep me, Jeeeesus!]and comes with many potential complications. He will be in the hospital at Duke about 2 weeks, and cannot return to normal activity for two to three MONTHS! OMG!

That surgery will occur at Duke in the hands of Dr. Walther, next spring.

If, during that surgery, they find any new pop-ups of cancer, he will have MORE chemotherapy, after he recovers from surgery, and that chemo will occur, presumably, in Boone.

He will not be having radiation. Dr. Walther feels that radiation has such drastic effects on that part of the body that it renders surgery extremely difficult.

For those of you who google or follow chemo drugs, Bill will be getting Gemcitabane and Cisplatin.

Bill's number one thought is that he so desperately wants to continue teaching at Appalachian. He loves it so much, he said. He is trying to work out a chemo schedule that will allow him to finish this semester normally at Appalachian, while getting his chemo on Thursdays, allowing recovery time until his Monday classes. He knows that the spring semester of 2010 is impossible, but hopes to return, completely cured, in the fall of 2010.

That's pretty much the summary. If any of you want details, do feel free to email me! At this point, I'm pretty much not doing anything but taking care of Bill, and making all this stuff happen, with him.

Bill's attitude is pretty good. He was kind of stunned today, as was I. Neither of us expected to hear about chemo. We thought he would almost certainly get a cystectomy next week (bladder out), so this is all kind of a stunner.

I didn't know to be googling about chemotherapy, so I only made myself an armchair expert on bladder cancer, alone. But by this time, next week, I'm going to know a lot more about the chemo--God willing and the creek don't rise, as they say down here.

Thank you, thank you, thank you for your love and prayers and light and thoughts and good wishes. Hugest, most profound gratitude.

God is good.

Love,
Beth

The post about the Oct. 1 meeting is being written!

Thank you for caring enough about Bill to check the blog just now!

I wanted to assure you that I am immediately composing the post with the results of the Oct. 1 meeting.

It should be up no later than 5:30 pm eastern time.

We had very unexpected results, but blessings too.

Beth

OOps. Oct. 1 can't be the ultimate moment of truth because...

I just realized (after a whole 'nother day of reading) that the Oct. 1 pathology report can only tell us what the scraped out tumors tell the pathologist.

That is NOT the whole story.

Oct. 1 can tell us the "grade" of the tumor--its aggressiveness/invasiveness rating. But what Oct. 1 canNOT tell us is the ultimate "clinical stage" number, which can only be determined after the surgeon goes in through the abdomen (rather than through the, ahem, so-and-so, as he did for this past week's inspection) and looks at the lymph glands. Without a lymph gland inspection, I am pretty sure they can only speculate about staging.

If any one lymph gland is participating in the misbehavior, then the stage can go as high as 4. And to know for sure that we are safely in a lower stage, they have to rule out the lymph glands.

This is good and bad. Bad because we have yet another kind of wait. But good because we have another break in which to calm down and get ready for the next revelation, while hoping the next revelation is one of purely good news.

AND we have great reason to expect that the lymph glands are clear--in that the first pathology report from Watauga Hospital in Boone, after the CT scan, said there was NO lymph involvement showing up on the CT scan. Meaning it's NOT at stage 4. And stage 4 is exactly where you DON'T want it to be.

So yeah. That's today's update.

I hope I'm not wearing out your interest with too-frequent updates. It's hard to know how to do one of these blog things. I have to guess what's too much, and what's too little.

I wish we could just have a big party and you could all just come over and play with us.

And make m'lord William laugh.

The Big Moment: October 1

Duke University called us today and said that Dr. Walther would like to see Bill on Thursday, October 1, 10 a.m.

Since that will be eight days after the surgery, and since he is asking us to come all the way to Durham for the meeting, I'm almost sure I correctly suppose that this will be the meeting during which the pathology report is revealed and Bill's options are eumerated.

YIKES!

HALP!

Bill is actually planning to teach both days next week--Monday and Wednesday--but his pain level is giving him some uncertainty about Monday, at least.

Either way, Dr. Walther was most considerate in picking a day that wouldn't interfere with Bill's schedule.

WHAT IS IT LIKE IN OUR HOUSE?

If you were here, you would experience puppies running through the house almost constantly and barking and playing tug-of-war with toy monkeys. This makes Bill laugh a lot and creates a fun, albeit circumscribed, atmosphere.

You would see Bill loitering in one of two places: either resting in his bed or sitting on his favorite sofa on the porch, which has a view of Grandfather Mountain.

You would note that we're both being pretty quiet, talking only for short bouts (I like A LOT of talking, but Bill likes to read books and look at his laptop, so I have to keep imaginary duct tape on my mouth not to annoy him).

You would notice that today Bill seems to feel a tiny bit better and a lot less freaked out than he did yesterday.

You would smell pot roast cooking, and Cuban black beans and yellow rice. I know it's not THAT healthy, but Bill wants comfort food this week.

You would see all the trees on the mountains outside the window starting to turn yellow and orange and lose their leaves, and you would note an enormous amount of rain and fog--which doesn't do much for the mood factor and which seems unpleasantly metaphorical.

And you would see me sitting in this corner on the porch, either googling every blessed article ever published on bladder cancer, or you'd see me typing this message to you on my laptop, and wondering how to express my profound comfort and gratitude that you are there, and reading this, and interested, and sticking with us. You can't imagine what it means to me, and to us.

I just love you.

Bethkins

Billy Bob Drennan is One Hurtin Cowpoke

Oh, but our Adventurer Billy Bob is a hurtin' cowpoke.

It's late afternoon, and we're back in the mountains--blessedly HOME.

But poor ol Bill is only beginning to feel what hit him.

He has pretty good drugs (thanks for the drug-specific prayers from K.G.!), but they barely touch the pain he is in. I mean, they TOLD him it would hurt like this, but there is such a difference between "knowing it's going to hurt" and "KNOWING IT HURTS", and right now, he is FULL OF KNOWLEDGE, lying on his bed trying to sleep and not to move.

The ride home (almost 3 hours) involved stopping every 20 minutes at restrooms for him, and even then, he could barely stand the feeling of "I Am Going To Scream If Anyone is In That Restroom When I Get There!"

His mood is pretty good, but our conversations remain pretty much superficial on the subject of his condition--he just doesn't want to talk about it much--so I try to slip in GOOD things I've found in my 23-hours-a-day of google research on bladder cancer. (23 hours is only a slight exaggeration).

Our Angels-in-Disguise neighbors G. and J. are bringing us dinner tonight, figuring we wouldn't want to deal with cooking after the experience we've just survived. Ohhhhhhhhh, what a blessing! I feel bad taking such a gift, knowing how much trouble and expense it is, but at the same time, we are practically kneeling in gratitude for such thoughtfulness and for hitting the nail so completely on the head. Indeed, we WOULDN'T have wanted to deal with grocery shopping and cooking tonight.

Friends are the whole deal. What an understatement that is.

More soon.
love
Bethie

Bill's procedure went well--mixed outcome...

I'm in the hotel, and I finally got to speak to bill (i had to call the nurse's station to find out why he wasn't answering his phone. OH! they forgot to put a phone in his room? THAT'S why.... Hmmmm.). He had completed his post-operation interview with Dr. Walther by 6:30 this evening.

It seems Dr. Walther shrewdly surmised that Bill wanted very little information while I wanted massive landfills piled full of facts--narratives containing every atomic detail.

So Bill got an interview which mostly comprised the phrase, "It's all speculation at this point. let's wait until we have the pathology report." Whereas I got a 20-minute tete-a-tete when I was in the consult room alone with Dr. W after the procedure--a debriefing so filled with facts that I could probably publish an article on bladder cancer in the New England Journal of Medicine.

The procedure was supposed to take one hour but took two. Part of that was some kind of problem with Bill's throat vis-a-vis anesthesia, to the point that they had to put some kind of gadget into his throat and hold it open so the air tubes could go in successfully. "Huge problems with intubation!" exclaimed Dr. W. to me, him being lucky that I have done nothing for the last 2 weeks but memorize medical jargon, so I could speak his foreign language. otherwise it would have been, from me, a big, "Say WHAT, dude?"

Bill's body handled the whole procedure like a very healthy adult, with no problems, yet having HUGE pain afterward, which took 55 minutes to get down to a "3" level on the famous 1 to 10 scale. As soon as he awoke from general anesthesia, bill told them his pain was EASILY an 11, until they found a drug mixture that helped him. Poor boy!

RESULTS
Not so great, but could have been worse. While I can't put every detail in a blog, as it wouldn't be, well, circumspect, since the blog is open to the public and bill probably doesn't want his personal details open to the public--I can say that it is confirmed that he had cancer, a large necrotic malignant tumor, and some baby cancers springing up all around it. But so far, no evidence that it has metastisized!

Good news: it was NOT adenocarcinoma! And it did NOT involve the urachal remnant (tube from bellybutton to bladder which remains from umbilical cord). Right there, our statistics went up 20 thousand leagues.

Bad news: he's got some serious cancer in there, and it was only SCRAPED OUT PARTIALLY today--NOT removed! So it's all still in there doing its thing.

He has: TCC -- transitional cell carcinoma--PROBABLY--altho the surgeon can't say definitively without the pathology report, of course, for legal reasons. He also has CIS--carcinoma in situ--sprinkled around.

They didn't take any of his bladder out today. they just used an electric current that is like a hot knife going thru butter (surgeon's metaphor) to scrape off the big tumor and take scrape biopsies of the little ones.

WHEN WILL WE KNOW THE ACTUAL FACTS?
In about 7 days, we will have a pathologist report and an appointment will be scheduled within 10 days from now at Dr. Walther's office in Durham (another trip down) for a face-to-face "counseling session" in which bill is presented with the facts, the options, the choices.

Thereafter, there may be another surgery. We can't know until the report comes back.

RELEASE TO GO HOME
Bill should almost 100 percent certainly be released tomorrow before noon, and I will drive him back up the mountain. He plans to lie in the back seat all the way home.

Not sure what effect this will have on his work schedule. I want him to take the rest of the semester off, but he is anguishing about wanting to keep teaching this semester.
Several of the key players, like his daughter and myself, think his energy would be better spent in healing himself than enlightening 19-year-olds as to the wonders of Hamlet. But we'll see.

Email me or email bill or call or whatever you want, if you need more info. Bill is THRILLED BEYOND MEASURE about every single person who cares about him. He just can't get over it--finding out how many folks really do love the ol' curmudgeon!

I'll post again as soon as we have any new facts--maybe even tomorrow.

thank you thank you thank you for caring. you can't imagine how much it means!!!!

love,
Beth

Update Pending!

It's 6:28 pm eastern time. once i can speak to bill in his room, i will write the report here. i need to see what his dr said at 6 pm. i thought i had all the facts, but bill was so sleepy at 530 and couldnt keep his eyes open so i agreed to go back to the hotel, but i tried to call him at 6 and they wouldnt let me talk to him bc the dr was with him, so let me get hold of him and see what the dr said, and i will post more. i did have a private meeting with the dr immediatlely after surgery, but i dont want to post certain things if they would upset bill, so i need to see what bill knows.

sitting alone in my hotel room. what a difficult, stressful, alone alone alone alone day it was. may i--or you--never spend a day like that again.

sorry for my spelling. im rushing thru this post.

Blessings and love and light for caring aboiut my sweet boy.

Bethie

Surgery time: E-e-e-early arrival!

Okay, we're all set. We have to be at the hospital by 6:45 a.m. tomorrow, Wednesday, Sept. 23. Surgery at 8:45 a.m., and Bill is the first patient. Yay!

Bonus: The hospital has valet parking--woo hoo! That makes it easier than negotiating the MASSIVE parking garage across from the MASSIVE hospital. This way, once we're inside the hospital, we can get lost much more quickly.

AFTER THE SURGERY, WE WILL GET NEWS, THEY TELL US!
Sometimes, you get ZERO news after surgery and must wait 7 working days for the pathology report, but they told us we will definitely get SOME information from the surgeon tomorrow.

But then we thought that maybe we should go with the AntiPsychosis Too - Much - Information - Avoidance - Plan, and if it is bad news, ask the surgeon to kindly keep it to himself, and just tell us where to show up for the next Bladder Party Event.

And Bill was only half kidding with that idea!

They think we will almost definitely be released by noon on Thursday, so we will get home to Blowing Rock before dark Thursday. Hoooray! Bill might not feel great (no stitches, but the mother of all aches will most likely be occurring You Know Where), but he is apparently going to have some envy-inducing medications to get him through.

I'll post again tomorrow night, with EVERYTHING the surgeon tells us, when i get back to this hotel and to my laptop after leaving Bill for the night.

THANK YOU FOR YOUR PRAYERS AND LOVE AND FOR BEING OUR FRIENDS!!!!!!!

Starting a little freak-out phase

These last few days before Bill has surgery and finds out all the details are getting harder and harder. Our thinking just keeps slipping back into this gloomy and anxious pond of vague imagery. It's hard even to keep mastery of the day-to-day details of life--dishes, trash out, even reading--because our life energy is being burned up with these thoughts, and we don't feel like doing even the basics.

So our new game is called "Find Ways to Think About Something Else."

This morning we watched a movie about alien pods attacking Iowa. It was satisfyingly gross. Then in one romantic scene, the guy brings the girl to his house for a little romance, and just after the first kiss, he whispers, "Why don't I go make a fire?" only we thought he said, "Why don't I go make a pie?" and we were like, "WHAT? DID HE SAY 'MAKE A PIE?'" and then there followed an hour of pie commentary through the rest of the movie--which commentary we found strikingly hilarious for some reason. Of course, it's not that hard to find things that seem funny when you're talking Iowa aliens and pie-making.

Then the other day, as we sat in the doctor's little examination room alone, waiting for 90 minutes and feeling extremely grim and depressed (ugliest office ever--terrible paint color, no art on the walls, stupid paper bed cover, ugh)--Bill comes up with something that struck me as so dang funny, I can still laugh whenever I think of it.

What happened was, I had brought this big piece of whole wheat bread in my purse (a Panera baguette) to eat when desperate, knowing we wouldn't have access to food for long stretches of time. So we're sitting there without talking, both feeling horrible and serious and morose, and after a long long silence, I said to Bill, "Would you like some brown bread? I have some in my purse."

He says nothing for a few seconds, then with a completely straight face, and still not looking at me, he says, "You sound like a Bulgarian woman--'Vood you like some brown brett?'"

"A BULGARIAN woman?"

Long silent pause. Then he looks at me, still with a straight face, and says, "Have you a beet?"

I don't know. Do Bulgarian women carry brown bread and beets around? OMG. We started laughing so hard that I think the nurses in the hall outside could hear us.

Other times, we try to think things up to make even tiny bits of fun.I got the idea of maybe renting some crazy kind of car to use while we're in Durham, just for the distraction of having something fun and different to drive.

And the dogs are funny. Always. Like right now, all of them are trying to get in my lap at the same time, while I'm typing this.

But I just thought I'd record the nature of this little mode that we are in, to keep the story real and not completely romanticized. Sometimes romanticization of illness bears terrific fruit--by which you can enjoy the taste of bittersweet songs, arrival of spiritual insights, and so forth.

And sometimes, you just can't see it any pretty way at all.

Going to Duke this coming Monday, not Tuesday

We have to go in earlier than we thought, so we are leaving here Monday afternoon, and staying in a hotel (a Hilton--whee!) near Duke Hospital on Monday night, and Tuesday night, and Wednesday night. The surgery is still on Wednesday--won't get the actual surgery time told to us until late Tuesday afternoon--but we have to meet the anesthesiologist people at 7:45 a.m. Tuesday morning. Oy. Poor Bill teaches till 5 on Monday at Appalachian, then jumps in the car for 3 hours to Durham, then plunges back into the clinic scene at dawn Tuesday. I'd be curled up under a chair whimpering in Serbo-Croatian if I were him, but he just plugs along cheerfully. I guess he'll finally get some good rest when they knock him out for the surgery.

More soon! Thanks for following this!

The Heart of Life

From "The Heart of Life" by John Mayer:

You know it's nothing new
Bad news never had good timing
But the circle of your friends
Will defend the silver lining

Pain throws your heart to the ground
Love turns the whole thing around
No it won't all go the way it should
But i know the heart of life is good

Pain throws your heart to the ground
Love turns the whole thing around
Fear is a friend who's misunderstood
But i know the heart of life is good.
I know it's good.

Duke University--Trip #1

First, THANK YOU, each one and every one, for your loving thoughts and prayers for us. We are truly feeling the effects! Bill probably never knew how loved he was until now, through you! It's SUCH a comfort. Thank you, thank you.

Duke Trip Number 1

It was a 12-hour round-trip adventure yesterday, 9:30 am to 9:30 pm, but we're so glad we live so close to Duke (in the top ten facilities in the world for cancer, and the facility Ted Kennedy chose). It's only a three-hour drive to Durham, exactly, and not a difficult drive. And we have PRECIOUS neighbors who helped watch our dogs, which was a huge, huge relief to us.

Our visit mainly entailed meeting our surgeon, finding out what happens next, and having vast quantities of Bill's various bodily liquids handed over to strangers in various separate clinics. :)

We LOVE LOVE LOVE our surgeon! It is an unbelievable blessing that he accepted us as patients, as he is a major player in Urological Oncology--a chemist, a doctor of biochemistry, an MD, a professor of urological surgery at Duke, a professor of pathology at Duke, overseer of clinical trials at Duke, and a urological oncological surgeon at Duke, educated at Michigan, Duke, and residency at UCLA. His resume is here.

Not too shabby. :)

He (Dr. Philip Walther) was funny, friendly, warm, kind, compassionate, unrushed, talkative AND, if you can believe this--he's from Wisconsin! He's a huge Packer fan, and he and Bill got going on that subject. Tiny world.

We got almost no information at all from him about Bill's cancer status--he wouldn't speculate, even though I tried to get him to--and says he will know nothing until he takes the tumor out, scrapes the bladder, and gets the pathology reports back. Then we find out what our fight will entail.

He will be doing a transurethral bladder resection, which you can learn about here, if you are so inclined, and not dining at this time.

The best thing he said was that he was "not at all convinced" that Bill has a "urachal adenocarcinoma"--a very bad thing to have--and that Bill might simply have the common kind of bladder cancer that 90 percent of bladder cancers comprise--transitional cell carcinoma. You guessed it. You can read about that here, if you are interested.

PLAN
This coming Tuesday, we go back to Duke and meet the anesthesiologist, spending Tuesday night in a hotel. Wednesday morning (assuming Bill's appointment is confirmed--we find out tomorrow), Bill gets the procedure by Dr. Walther, then stays in the hospital Wednesday night and comes home on Thursday.

WHAT THE DUKE CLINICS WERE LIKE, IF YOU'RE CURIOUS
The Duke Clinics were fabulously organized, but what a sad insight we got into the world of so many cancer victims. Appearance-wise, each clinic (one for blood work, one for chemo, one for seeing doctors, one for every separate thing)looks EXACTLY like a gate at an airport, with a reception desk, and rows and rows of chairs. But each clinic seating area was JAM PACKED with people, most of whom were in visually terrible condition. Several of the clinics were so crowded, there was standing room only, and the people looked sooooooooo sick. From 20-year-olds up to very old, and such a variety--fat, thin, male, female, rich-looking, poor-looking, all races, even a pregnant lady. It was a shocking sight. All I wanted to do was spend the rest of my life helping them all somehow. It was grippingly heartbreaking!

But there was never more than a 30-second wait for us at each clinic we had to go to, and we were treated wonderfully by everyone.

IRONY
So much cancer is caused by tobacco, and Duke treats so many cancer victims, yet the whole Duke situation was funded by tobacco money--Durham being the tobacco capitol of the south. Kind of weird, eh?

SO, YEAH
So yeah. That's the update. Thanks for caring enough to read this blog thing. I hope you don't find our adventure upsetting, but more informative, even calming. Cancer seems 100% terrifying when it's out there circling like a shark, and you feel like it might grab you at any second, but once you get into the cancer world, you see that there's a lot more hope and a lot more options than you ever imagined. Not to say that there are no sad endings, but before this experience, I kind of naively thought ALL cancer endings HAD to be tragic, whenEVER someone got a diagnosis of cancer, but now I see that a huge number of people make it through safely and are completely cured.

And even for the ones who don't, there is beauty and love and light and surprise sprinkled in the most unexpected places.

GRATUITOUS LECTURE
Listen to me: don't use tobacco. Do NOT NOT NOT NOT do it. It IS a circling shark, and it IS looking for YOU.

Update tomorrow! Pretty good news!

Full update tomorrow. We're both home, and we had a great time, LOVE the surgeon, and heard better news than we were ready for. Will write details tomorrow. Super tired. THANK YOU for your thoughts and prayers and love! A million hugs and kisses! Beth and Bill

We finally got the radiology report! Pretty good news.

After several phone calls and a ten-day wait, we finally got a faxed copy of the radiology report. And we THINK it's good, but it's really pretty darned encrypted, apparently in the radiological language equivalent of Klingon.

Disappointingly, it was really, really, really short, as in two small paragraphs, so we aren't brimming with detailed information. But the dearth of info might be because a CT scan of just the abdomen (which is what Bill had) doesn't give anywhere near the amount of info as one would get from a whole-body detailed MRI.

But it's SOMETHING! And at least it SEEMED good to us, although I'm still googling at Nascar speeds through all the terms, trying to figure out if the report is really as good as it seems.

They don't give stages, and they don't tell about invasions, if any, and they don't tell what kind of tumor it is.

But they DO go through the major organs in the abdomen and tell what they see. (For you English majors, it's all written in passive voice, which gives the impression of great legal timidity on the part of the radiologist--like he doesn't want to commit to whether he actually was or wasn't there while he was reading the scan. "No upper intestine lesion is observed." "No aneurysm is identified.")

Anyway, what you want is not my nonsense.

So here's the summary:

He did see the "mass in the dome of the bladder. Malignancy to be excluded." At first we thought that meant they were excluding malignancy, but then we realized he means that a biopsy is the only way to determine malignancy. (That gave us a happy thrill though for about 30 seconds.)

He did find two cysts, one in the liver and one in the kidney. That would scare you at first, but he writes that they are "circumscribed and nonenhancing" and my reading on those two words has been nothing but comforting, so I don't think he suspects trouble.

He also found an "arteriosclerotic calcification adjacent to the uncinate portion of the pancreas" which sounded freaky, but my googling leads me to believe that's just that Bill has plaque in an artery near or against the pancreas.

He also doesn't "identify suspicious retroperitoneal adenopathy" or "pathologic pelvic adenopathy" which I'm pretty sure means nothing spooky going on in Bill's peritoneum/pelvic area. HUGE relief!

The scariest part of the report was where they repeated what the urologist wrote, before the radiologist gave his opinion lower down on the page. The urologist wrote "large necrotic tumor near dome of bladder, questionable adenocarcinoma of bladder with possible extension into wall of bladder. Left renal (kidney) cyst." On his other report, the urologist wrote, "Very suggestive of possible urachal involvement."

If anyone thinks they could help in some way (or if it would help you in some way) if they had a full copy of the radiology report or the urology report, let me know, and I'll ask Bill if it's okay to send it to you.

We'll know more after our visit to Duke this coming Tuesday, the 15th. I'll post before then if we find out more, too.

Thank you beyond all words for your emails and cards and sweet phone calls and everything else! We'll write back very soon. Right now, we're just calming ourselves from ten horrible days of looking down the barrel of a big, big shotgun, and thanking heaven for all the ways the shotgun situation now seems so much better than it could have been.

Asteroid showers of love to each one of you for caring about dear Bill.

W-A-I-T-I-N-G STILLLLLLLLL!

Ay yi yi.

I guess the medical profession can spot Cancer Newbies a mile away.

Newbies to the cancer world are the people who think that they should receive test results within, say, a flipping WEEK, so that they can, say, SLEEP AND EAT AND EXIST due to having received the TEST RESULTS that deal with the FUTURE EXISTENCE of their loved ones.

We were newbies, but we have now officially been changed.

We are becoming Experienced Cancer Victims now. Waiting TEN DICKENSIAN DAYS for the radiology interpretation of a CT scan? No big deal. Hey, life's a blast! What's the big deal about receiving a little report on the future of your very existence?

(((Subtext: AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA! HELP! HELP!))))

Tomorrow will be DAY TEN of waiting for a report on the results of a CT scan of Bill's abdomen.

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!

SOMETIME tomorrow--we naively and stupidly hope and actually THINK--we will get a fax of the radiology report.

Then again, given stolen hospital hard drives, broken urologists' computers, dueling banjos, and a mountain location accessible only by 4-wheel-drive trucks and semis loaded with moonshine, what are we really THINKING, expecting to hear anything by Friday???????

Still waiting, but...

And STILLLLLLL we wait for the radiologist report.

It's 6 days till we go to Duke, though, so at least we won't have to wait so much more than that.

We ended up with a printed report on the CT scan, but only from the urologist, who is only allowed, apparently, to speculate on the scan results. There were quite a few words I didn't know, and unfamiliar terms in the report. I googled them, and sort of wish I hadn't, as they opened up whole new vistas of scary possibilities I hadn't even thought of.

Result: a whole day of crying on my part, today, from the something-under-the-bed-might-jump-out-at-you spooky ugliness of the whole situation. I can't stop. But by tomorrow should be better.

Bill is pretty even-keeled, even cheery, so that's a huge blessing.

I'll write the SECOND we hear from the radiologist.

If you've written us a gorgeous, beautiful note lately and haven't heard back, please forgive me for my slowness but KNOW FOR ABSOLUTELY CERTAIN that your words of love are pretty much--seriously--what we are living on right now, and our gratitude is profound. Profound. Thank you, and we WILL write back as soon as we can.

We got at least one bit of information!

I think the nurse had mercy on me and somehow got the radiologist to at least take a quick initial look at the CT scan, and then she asked our urologist if he agreed.

The good news seems to be that Bill's tumor has NOT broken through the wall of the bladder, "as far as they can see right now." The urologist said it looks like that to him, too.

It is into the wall of the bladder, apparently "up against" the outer wall, but not broken through to the outside.

If this is correct, then Bill is definitely not in stage 4, which requires a complete break-through.

Now I'm desperately praying that it WON'T break through while we wait for the appointment on Sept. 15th.

I was not able to get any more information from the nurse.

Except this next point, which is the most bizarre thing of all, so far: the nurse said that the clinic's "hard drive got stolen" and that's what the problem is. She even said, "Maybe some of the radiology reports were on there, and that contributed to the problem."

Okay, I'm sane, but this whole story of the urology computer situation is like a Salvadore Dali painting, isn't it? The hard drive GOT STOLEN? Was it backed up? Are all the CT scans lost? What the DICKENS?????????????

Anyway, in a saner vein, we also got the packet of information from Duke by mail today, and it mainly talked about how we have to have his records sent there BEFORE we arrive, or we can't have a consultation when we get there. Yikes! I hope all his records weren't on the stolen hard drive. What in the WORLD is going on!?

Anyway, the Duke packet listed hotels and showed a map, but it didn't say whether he might go in for surgery on the next day or anything like that.

So next week, we should get the complete radiology report, assuming it's not sitting in a pawn shop somewhere, and I will post that, no matter what it says. So if I haven't posted it, it just means we didn't get it yet. It doesn't mean it was so upsetting that we couldn't post it. I WILL post it!

Not sure this is the greatest place to be, in America, for serious illnesses.

Tee shirts down here say: "Paddle faster! I hear banjos!"

I hope the radiologist wasn't recruited from a rocking chair on a porch somewhere.

Love,
Beth

No report yet, and you won't believe why not...

Well, I couldn't stand waiting so I called and asked for medical records to try to at least avoid an answering machine.

I got a really, REALLY nice nurse, who talked to me at length, but...

Guess why we haven't heard a word from the radiologist!

Because the urology office HASN'T EVEN SENT THE CT SCAN TO THE RADIOLOGIST YET!

They apologized that their "machine has been down for three days," and they haven't been able to send anyone's CT scans to the radiologist in all that time.

I told her I didn't know how we could continue to breathe for a whole weekend without any word, and she was very understanding. She said she felt terrible for us and was going to try to personally find out something, even if only the stage, without all the other details for now.

For Pete's sake! I could go over there and WALK THE CT SCAN DISC over to the hospital. It's ONE BLOCK!

Again, we feel like we're in a dream. This is just so bizarre, it's impossible to believe it.

Bill, however, is delighted at this result. I'm not kidding! He says he is feeling happy and normal, and was dreading getting the report anyway. Now he can have a nice weekend, he says.

I know everyone has his own way of dealing with things, but I'm at the other end of the spectrum. Still, I respect his process.

But, wow.

STILL waiting!

We are still waiting for the radiology report. I put in a call to try to hurry it along, and all I could get was a nurse's answering machine. Holy cow!

Well, we SURE do hope they tell us something before the weekend! I've run out of fingernails to chew off.

I will post here immediately after we learn about it, no matter what it says.

Thank you for caring--thank you soooooooooooooo extremely much.

No Duke University till Sept. 15??? Yikes!

Today we got the call that the earliest we can be seen at Duke University is Tuesday, Sept. 15 in the afternoon. That seems like a long time from now, if the tumor is as bad as the Urologist thought.

So our plan now is to wait another day until the radiologist gives a full report on the CT scan findings, and if the tumor is really the vicious kind we suspect, then we are going to call the Duke guy's office until we get in on a cancellation. I ain't waitin around for two weeks for the shoe to drop!

Our kids are all flying/driving in to be with us this weekend for a last hurrah to celebrate the old days of health and to be together one good time before whatever we are facing next. Bill is delighted and feels great.

It's a huge blessing that his only pain is a little twinge in his abdomen. It could be SO much worse!

S.C. came by this morning to tell us how to face this all with faith. He has had 22 operations for cancer, including brain cancer, and is now completely healed. It was as exciting around here as an old timey tent revival. Even the puppies were jumping all over the place. ;)

The craziest stuff happens when the craziest stuff happens.

Love,
Beth

P.S. About blogs

A friend sent this idea. If you want to write to Bill or to me (it's okay to communicate with Bill now, as he's feeling better, and if he's not, some days, he will send you to me)and yet you don't want to use blog comments, just email him or me, if that's easier for you.

Secondly, if you know someone (or people) who should know about Bill, you have his permission to share his news and this blog or his email. At first he wasn't ready to do that, but now it's okay, especially where prayers would result, such as from prayer chains or groups and such.

Faith, hope, and love.

Beth

Tuesday September 1 Adventure

This entry will be short because we want to get the news out before the night ends.

We thought a blog would be a good way to do this, as you can read it or not, as you wish, and leave comments, and won't have me emailing the living starch right out of you (me=Beth). This leaves the choice with you as to how much info you want.

So today, Bill had his CT scan with Dr. Pitts in Boone.

The results could have been a lot better, but a little bit worse.

Backstory: Friday (four days ago) Bill was diagnosed with a bladder tumor in the top (dome or superior wall) of his bladder. The first diagnostic step after that is a CT scan to find out more about the tumor.

So today he had his CT scan, which took about an hour and involved drinking a bunch of weird milky gradoo out of a glass bottle.

The results are not definitive until a radiologist at the Medical Center reads the scan, but the urologist, after many years in his specialty, suspects strongly that Bill might have one of the most aggressive forms of bladder cancer, and the rarest.

It is called adenocarcinoma and is on the urachal point, where the remnants of the umbilical cord connect to the top of the bladder. It might even be called urachal adenocarcinoma, but I'm not sure. You can google it for details.

Anyway, the doctor is also worried that the CT scan appeared to show that the tumor may have broken through the wall of his bladder, but he's not sure of that, either, or about spreading or what stage the cancer is. That's for the radiologist, pathologist, whatever-ist.

Ultimately, however, this urologist does not want to work with this rare kind of cancer, and is referring Bill to the top urology oncology center in the US: Duke University, to the top surgeon. This surgeon has completely cured people of this exact kind of cancer, and we have reason for optimism. Cures have been effected even without total removal of the bladder, just removal of the cancerous portion.

So now we wait.

We wait for the radiology report to give more details on the kind of cancer, and we wait to hear when we will go to Duke to meet the Big Dude of Bladders.

We will post the next bit of information here as soon as we get it.

Bill's mood is calm and optimistic, but we both had our minds warped by the news that it might be this crazy kind of cancer. More than 90 percent of bladder cancers are non-theatrical, calm little treatable things. We kind of expected to hear that it was that. But no. This type is so rare that the urology websites say some urologists never encounter it even once in their entire lifetime of practice!

I'm using THOSE numbers to say that mathematically, the chances are that Bill does NOT have that type.

Anyway, God bless our children and our angelic neighbors who are all working together to come here and help us out, including helping with our three little dogs while we are at Duke.

And God bless the friends of ours who have written us these gorgeous, loving emails, and who have taught us a BAM Right in the Head lesson about what stunning effects human love can have on a dark night.

And God bless GOD who has shown us that He can appear at the most unlikely places in the most unlikely ways with the most amazing timing.

Thanks for reading this and for caring about Bill. Please pray for him or think good thoughts or beam him light or whatever you do. He can feel it. Thank you, thank you.

Love,

Beth