Thursday, May 31, 2012

Apocalypse Thursday (But Bill's Not Too Bad!)

First Bill. Cause he's what this blog is about, despite my many attempts to hijack all the attention to myself. hahaha

Bill had his blood test today, and while the scores weren't great, they weren't bad enough for him to need ANY kind of IV at all, not even a transfusion or platelets! We could hardly believe it!

Last night he had The Fever again, but it only strikes at night.

His nausea was better than usual today, and even though his mouth sores are spreading forward from his throat to the front of his mouth, the mouthwash is continuing to alleviate the pain and irritation. It's a miracle medicine. P and G, THANK YOU AGAIN for that lifesaving maneuver!

[Special note to CS: IT'S HERE, AND WE BOTH DIED WHEN HE OPENED IT, AND WE HAD TO BE RESUSCITATED BY THE PUPPIES. YOU WILL HEAR MORE. OMG! COULD NOT BELIEVE YOU DID THAT! YOU ANGEL!]

Small features: (1) Bill shaved around his beard, a couple days ago, and the hair didn't grow back in at all, so we're waiting for the bald head, beardless, eyebrowless, eyelashless look to appear any day now, and he's hoping he looks very suave. (2) He lost 3 pounds this week. (3) He looked kind of zombie-like today: pale, and big dark circles around his eyes, and his eyes looked really big, the way kids' eyes look when they're sick, so it was hard to smack him with the broom for not carrying my weights up to the attic for me. OH WOW! JUST KIDDING!

Here endeth the story of Bill's day. If you wish to see a brief Drama Queen report on the nightmare of Beth's day, I have pasted the narrative from my facebook page. The whole scenario landed on me within a one-hour time span, and all I did was cry, and call people, and wonder if God was mad at me. You can skip this part if you don't like whiny girl stories:

======Beth's No Good Terrrible Horrible Poopy Doopy Day====

WORST! DAY! EVER! Thought I was HAVING NIGHTMARE! 

Day begins: Bill's mouth sores spreading, he's sick, white, hair falling out, miserable. Freaks me out. 

5 minutes later: find out a dear friend has been emergency hospitalized; I make plans to visit her while Bill has chemo transfusions; freaking out more; 

5 minutes later, I find bug crawling on my bed, and notice bites on my arm. Not flea or tick. IS IT A BED BUG (1-800-SUICIDE R US)????? I go crazy with anxiety; catch bug in jar, use spotlite and magnif. glass, study bug and internet pix, decide it's a carpet beetle, a GROSS creature that lays larva on your carpet! FREAK THE FRICK OUT OF MY MIND! 

I go hysterical crying. Call Pest Control, am so worked up, the owner makes a special trip from Lenoir to help me. I couldn't then leave house, so Bill had to go ALONE to chemo (not sposed to drive) and I couldn't visit friend in hospital. 

Pest Control examines room; I'm promising God I'll buy lotto tickets and give Him all my winnings if it's JUST not bedbugs. Pest guy concludes: CARPET BEETLE. 

NOW I must rip out carpet, throw away whole bed and furniture, have commercial cleaning, whole house carpet, grab 5 garbage bags of clothes, wash/dry in hot drier, move to porch to sleep for next month, THROW AWAY ALL blankets, pillows and bedding, block door so no dogs can go in room, will need two rounds of pesticide. All this by noon. I took a sedative, cried, called my mom, worried about Bill being alone, worried about my friend. 

And on top of it all, now I owe God millions of dollars, cuz it WASNT BED BUGS! 

This day took 10 years off the end of my life. 

HAALLLLLLLLP! ALIENS! COME GET ME! PLEEEEEEZE!




Wednesday, May 30, 2012

Wednesday (Please Beth, make it SHORT!)

Trying SO hard to make this one shorter. I write TOO MUCH.

1. Bill said he'd give today a grade of C-minus.

2. He was nauseated off & on all day.

3. He was fatigued.

4. He got a lil bit scolded for stepping on and killing 2 sunflowers and 3 black-eyed susans while fooling with a hummingbird feeder.

5. His fever went up to almost 101 last night, 2nd night in a row. S'posed to go to ER at 100.4, but he refused again.

6. Sores in mouth becoming a BIG DEAL. They start out feeling like sand, then blisters, then blisters pop, then white patches appear, then the patches fall off leaving "raw meat" as it was described to us, and at that point you can't talk or swallow water, and have to get hospitalized for IV nutrition/hydration. So here comes that side effect, developing more each day. He's at the blisters stage.

7. Two angelic, devoutly Christian women friends, one who hardly knows us, worked together today, without our even asking, to get Bill some medicine to start fighting those mouth sores. One of the women knew about the medicine because she had chemo and her mouth and throat fell apart like this, and she ended up in critical care from dehydration/starvation. She's never even MET Bill, but simply loves Bill automatically as a Christian brother, and these two women made this happen. This medicine costs $734 a bottle. They had it here by 8:30 am. You wanna talk about people who walk what they talk? Was that love? Was that charity? Kindness? Empathy? I could cry from the beauty of what they did. This medicine completely stopped Bill's mouth pain! It can be used up to 10 times a day. God bless those women down to their smallest atoms and every drop of their souls.

8. At dinner, he couldn't eat much, and his fever is headed up near 100 already, so he's going to bed. He feels pretty darn bad. He was carrying his throw-up bucket around with him today.

9. Tomorrow, he gets blood drawn and any IV replenishments he needs.

10. Funniest thing of the day: We gave the dogs an empty lasagna pan to lick (not much to lick), and the poodle took possession of the pan and started carrying it around in his mouth EVERYWHERE he went. It is empty and weighs very little, but is bigger than he is, and we died laughing all day when he'd come around the corner with that huge lasagna pan in his mouth. Brought it outside when he played fetch with Bill. Took it with him for naps. Wish my camera worked. Anyway, you can picture it.

I'll post tomorrow evening with news of his blood situation, IV's needed, transfusions, platelets, etc. as so many things get crunched by this poisonous chemo.

Thank you always for caring and loving and praying and thinking about Bill. He so much appreciates it, as do I, and he so much doesn't deserve this.

Love you all (and remember, if you wanna get this blog in your inbox, give me your email address).

Bethie Wethie

Tuesday, May 29, 2012

Tuesday is Better!

We are grateful to you and to God and happy to report that today was better than yesterday, in some ways.

Because of a commotion with the dogs at 4:30 am, Bill woke up and took all his meds, so that by 7, when he woke up for good, he felt much better than his past queasy mornings.

His nausea, however, is changing and spreading throughout the day, rather than just existing in the mornings, as it used to.

Fatigue is his other strong problem.

But today, he developed blisters all over the roof of his mouth and in his throat. He's never had this before, but we read about it. Lots of you sent me ideas for helping with that, and we are going to try them all. It does hurt him to eat or drink, but if those little things break (which I'm thinking is next), he will be in trouble, I imagine. I hope it's not like having a hundred open canker sores! (Dianne B: they wouldn't let us do the ice-in-mouth thing during administration of red devil; said the new version of the drug makes the ice no help at all.)

For some reason, I was balancing all the plates, emotionally, until the blisters. For some reason, it was just one too many things. I kind of fell apart the minute he told me, and I spent the day being gloomy--actually the word "numb" is what I felt. I couldn't even eat today. I don't deal with strong emotions too well. I suppress them. Then I either "think" I'm happy, or I mope around. Oh well. I put myself in my room and said I couldn't come out till I could act nice. I never did come out. Still here! haha It's not the blisters that are so upsetting. It's the appearance of something new when I think there was already more than enough going on.

NEWS FLASH: If you would rather receive this blog in your email inbox, I will add your email to my new list. I have about 25 people who've asked to get updates this way, so they get the update within a minute of the blog being written, and don't have to search and fool around looking for the website. Just send me an email and I'll add your name. It's easy. The names are blind-copied so no one sees anyone else's name. I'm beth dot drennan at gmail dot com.

Here's to a better tomorrow! Next Dr. visit is Thursday for blood work. We get the results on the spot, and he either gets a blood or platelet transfusion or magnesium drip or whatever he needs.

We love you, and your love for us is getting us through every day. As in REALLY. Not just saying it.

Love,
Beffie and Billy

Monday, May 28, 2012

Monday, Monday: Can't Trust That Day

Not a good day at the Cowboy's house.

He woke up sick again, with his bucket, and feeling just horrible, he said.

Normally, he gets a good few hours in the afternoon, but not today. The membranes in his mouth are starting to go (a side effect is a mouth and throat full of sores; oh dear Lord I hope he doesn't get that now), and his soft palate and throat hurt too much to talk. He could hardly eat. He liked some hot tea I made him with lots of honey and cream.

But he couldn't even sit up much today. By mid afternoon, he was trying to sit with me, but he couldn't stay awake. Then he tried to sit on the porch and read, but he got worse and worse until he said he feels like he has the full blown flu, his throat is killing him, he is nauseated, and in pain all over.

So he just gave up and went to bed, no food, just water. Completely miserable.

We have rarely had a day this bad, but maybe we have.

I tried to interest him in some computer games, or watching TV, or just lying beside each other, holding hands, and being quiet. But he was too miserable for even those things. He just needed to leave reality, and that's what he's done. He's asleep, and I hope it's for the whole night.

I don't know if he can continue this. This is a thousand times worse than anything the cancer ever did to him. Whatever he decides, through prayer and consulting with his beloved fellow Christians at his beloved church, that's what he will do, and I will support him in anything.

I'm sorry we didn't have better news today. As our friend Anna B said, maybe this is his low point, and he will come up from here. Lord, hear that prayer.

Love and thankfulness to all of you for caring all this time. You are our wings.

Bethie and Poor Ole Bill

Sunday, May 27, 2012

Sunday: A Lil Crash&Burn, Then Better

This ends up better than it starts, so don't worry.

He woke up early. Last night he fell asleep very early, feeling wretched, with a fever. So he forgot to take his nausea meds.

He woke up throwing up, but nothing in his stomach, so dry-heaving into a bucket all morning. Oh, man, talk about your heart breaking. He took his pills, like he was told, "even tho he might throw them up," but luckily, they stayed down and eventually, the dry heaves stopped, but before they did, he had a DIFFERENT problem, which I can't mention, and he had to contend with that WHILE DRY HEAVING, so it was just AWFUL!

He said a little more of that and he is quitting chemo and giving up. He said it was the worst experience he has had in his life, throwing up continuously for a long time like that.

I wish I had better news.

His calves and kneecaps were killing him last night, but were better this morning. He has spent 99% of today lying down, just trying to get through it all.

He is losing his ability to eat now. Everything tastes like metal or rust and is horrible. He can only eat eggs and sweet things and spicy things right now. Apparently, the taste has to override the metal flavor in his mouth or he can't eat it.

A good friend (David C.) noted the dangers of his drinking scotch while in chemotherapy this drastic. Bill took that seriously and is now cutting back and looking into whether he should have any alcohol at all, between the chemo and the tylenol in his one pain pill he takes in the morning. [Only takes one 5 mg pain pill a day. He is so brave. You wouldn't believe it.]

By late afternoon, he is back in misery world again. Like right now, he is lying asleep in his dark quiet room, just avoiding life. When he wakes, he won't be hungry, and he rushes back to bed, to sleep and escape the bad feelings that dominate his consciousness.

Also, about food: you'd think, well, give him the most favorite thing he can possibly have, but the glitch in that plan, as we learned from a shrimp scampi episode (formerly a food he adored), once he eats anything, if he then feels queasy and tastes metal, he forever after hates that food. So we have to be careful not to give him stuff he likes. Isn't that weird?

I think we're looking at a slow disintegration of his condition, toward what they call the "nadir" (his lowest point in the 2-week cycle), but after 14 days, he will be back up again (zenith), and ready for the next attack.

You can see why people just quit this stuff.

He has told me that he is doing it because he worries how I would make it through life on my own, as I am so entwined with him, and we are so interdependent and so inseparable. So I think he is sort of doing all this for me.

Can you imagine how that feels for me, though HIS feelings are far more important than mine! But I feel a mixture of guilty, adored, sorrowful, and thankful. Untangling all these feelings is like sneezing halfway through weaving a hammock and having to trace all the strings back to where they belong. What do I do? THANK him or urge him to let go, that I'll be fine!????? I will, but he knows how emotional I am, but I promise him, "I'll get by with a little help from my friends."

Cancer is like your first time snorkeling with a mask. You can't believe what all is down there.

THANK YOU for your prayers, your love, your willingness to do ANYTHING for us. We are living in that feeling of safety you have given us with your love. May we, or someone, do as much for you, sometime, somehow.

God's name be praised. All things work to good for them who love the Lord.

Not SOME things. Even this. I believe that.

Love and serenity and gratitude to you all,
Bethie




Saturday, May 26, 2012

Saturday: His Kevlarness Kontinues

This sure won't be long!

But wanted you to know that the Kevlar William is STILL not the least bit nauseated, well, maybe the LEAST bit, but not much. He eats three meals a day, is still drinking his scotch (!) and just seems kind of fine!

His mouth tastes like metal, he says, and he feels like his muscles have no interest in performing duties such as walking, so he's in bed a lot, but he is telling ME that he has no real symptoms. He could by fibbing, though, as he knows I worry too much when he has symptoms, but I guess I believe him!

Last night, though, his fever got within one degree of having to take him to the ER, according to the take-home instructions. And he was beet red most of the day, all over. He said to tell you he's in the very slightest spiral downward, but that it's not the Firebombing of Dresden yet.

So far, so good. THANK YOU (ENTER ALL CORRECT BEINGS, FACTS, TRUTHS, ANGELS, POWERS AND PRINCIPALITIES THAT DESERVE CREDIT).

After what we expected, we are nearly prostrate with thankfulness for being spared, even if tomorrow it all goes to the hot place in a handbasket.

Love to you all!
Bethie

Friday, May 25, 2012

Still NOTHING! No Side Effects! Shock & Awe!

Just a goodnight update to tell you with exceeding great joy that our Kevlar Kowboy William STILL, at 9:35 p.m., has had NO side effects at all, except his entire skin turning bright red, and a slight temperature of 99.

No nausea, no fatigue, no bone pain (he even got the shot today that's supposed to cause bone pain, but so far, nothing!). He's been energetic, went to the clinic, did ERRANDS (can you believe this?) and insisted on going to the grocery store with me! We even cooked out hamburgers, and he ate TWO!

He also took a new vow that he will always be the one driving from here on out, after I drove to the clinic. I felt I did a fine job of driving (his car, so, yeah, okay, I'm not THAT familiar with it), but he said that after experiencing my driving skills, he was fairly certain that he had a significantly higher chance of dying from my driving than from his cancer.

Well, I NEVER!

I'll post again tomorrow. I keep waiting for the shoe to drop: you know that feeling when you are sure someone behind you is going to pop a balloon, but you don't know exactly WHEN? That's how I felt all day, and was, shall we say, ON EDGE, to put it nicely. (For example, I threw a yard implement all the way across the street, purposely crashing it into some trees because it repeatedly frustrated me. A few little issues in the caregiver, needing to be resolved.)

Well, good night all. Thank your for your prayers and thoughts. Even if the Reign of Terror or Dresden Firestorm starts tomorrow, we are infinitely grateful for what we were dealt TODAY.

Love to all!
Bethie

The Kevlar Cowboy! What, What?!?!?

He's made of Kevlar.

NOTHING HAS HAPPENED!

He slept great, feels perfect, made himself a nice big cheese omelette for breakfast, before I woke up, with coffee. Read the paper, played with the dogs.

As the Brits say when they are shocked, "What, what?!?!?!?!?!"

Thought you'd enjoy the same extreme, severe relief I had when I woke up wondering what a Zombie Apocalypse would be like.

Will post again tonight. Just wanted you to know the SO FAR great news.

Yes, it can change, but for right now???????????? We'll take it!

THANKS, LORD! THANKS, CAUSATION!!! THANKS, SCIENCE!! THANKS, DOCTORS!  THANKS, DRUG COMPANIES! THANKS EVERYTHING AND EVERYONE and especially those of you who are praying.

(Anna B? WHAT did you say to God, you lil saint!?)

Love and (so far) extreme happiness,
Bethie


Thursday, May 24, 2012

Red Devil! Received! Countdown to Drama Begins

At about 4 pm this afternoon, after many hours of "pre-meds" (the medicines they give by IV to prepare you for the chemo)...

BILL

GOT

THE

RED

DEVIL!

Adria is its nickname at the clinic (for Adriamycin) but its real name is, as you may recall, Doxyrubicin--referring to its AMAZING color!

It is exactly the color of pure ruby! The most beautiful chemo he's ever gotten.

They gave him two syringes of it, shooting it into the tube that they installed into his under-skin port on his chest. Each syringe takes 5 minutes. He felt nothing; no heat, no pain, no burning. Thank you ALL OF HEAVEN for that!

The nurse dresses up like she's doing brain surgery, to give this stuff, as it's so dangerous, and they had to drape things all over Bill so it wouldn't touch him.

Just before he got the Doxy, the head of the Chemo Center rolled up a stool, knee to knee with Bill (Bill was in his huge blue plastic lazy-boy chemo chair), and you know that when medical personnel get knee-to-knee with you, stuff's gonna be said.

The guy basically did his job. First, he asked what we knew, dispelled some fears that were unlikely to be grounded, but then, as is his duty, he told Bill the worst case scenarios.

Oh.

My.

Gosh.

We were both so freaked out after hearing what MIGHT happen, that afterwards, I honestly was staring into Bill's eyes, trying to read his expression: was he even going to receive this ONE TIME or just walk out right there.

He's brave. I am almost sure I would have walked.

They GUARANTEED that EVERY hair on his body is going to fall out, beard, hair, arms, completely hairless. Bill, of course always the comic, said, "Gee, I could've saved 5 bucks on that haircut I got yesterday."

I said, "Yeah, wash your car, it rains. Get a haircut, all your hair falls out."

Then they said he is DEFINITELY going to throw up and have dry heaves and the only variable will be whether he can survive that at home or whether he has to be hospitalized with IVs. They said they are giving him EVERY one of the MOST POTENT anti-nausea meds known to man, but that I should get him to the ER right away, if he starts continuous dry heaves.

He is also DEFINITELY going to be fatigued like he's never been in his life.

He is also DEFINITELY going to lose ALL his white blood cells and have to get a shot tomorrow that causes such intense bone pain that it requires the most powerful anti-pain medicine they can prescribe, in order for him to bear the pain.

OH. MY. CHIPMUNK. I AM SO FREAKED OUT.

OF MY MIND.

But Bill is calm! He was like, "Uh huh, yep, okay, uh huh, gotcha, good enough, okay, yep, thanks."

So he got the ruby devil, then the Gemzar, then we came home, and he had been given steroids which make him like he's high on happy drugs, so he was hilarious all the way home, criticizing my driving, and telling me that in 1927 they invented this thing called the TURN SIGNAL and why was I not aware of that, and so on. Honestly, I was laughing so hard at him, I could hardly drive. He was like in stand-up comedian mode.

Also? Right after the Doxy shot, he got HUNGRY! And has not been able to stop eating since the shot! WHAT??????????????????

So I'll end this here. He's in his bed, all comfy, all his supplies there, tons of anti-nausea meds lined up, that he has to wake up every 6 hours and take, for the next 3 days. They said, "Even if you throw them up, keep taking them." OMG.

So tomorrow afternoon, I drive him over for this shot that causes the unbearable bone pain. They said I should not even ATTEMPT the drive without throw-up bags, lots of them, in the car.

OMG.

I'm gonna be a great caregiver. I promise! But.....when other people throw up, I throw up. So it should be a mighty pretty little scene around here for the next, ohhhhhhhhh, TEN WEEKS! I might even lose the weight I've been fighting this year. Poor ole BillyBob is SURE to thin down.

Unless, by the grace of God, he's the one in a zillion who doesn't get these side effects. Gulp.

Until tomorrow, then, farewell.  I'll post late in the day tomorrow, probably.

Thank you for caring. Let's hope that, as much as WE hate the Doxyrubicin, the cancerous tumor hates it EVEN MORE!

Love to all,
Bethie



Monday, May 21, 2012

Best of the Worst Case Scenarios!

Just got home from long oncology apptment. We were beyond petrified going into this one! Worst dread in the whole three years.

Best news: NO BRAIN TUMOR, though they did see brain changes, but those are going on the back burner for now--they're not cancer or tumors. Hallelujah!

Other news: He DOES qualify for "red devil" chemo. Is that good news? Not really. Is it bad? Not really. I think we're at the Nietszche Niche: "Beyond good and evil."

He starts in two days: Thursday afternoon. We get ONE HOUR of "counseling" on how to prepare for this dramatic drug, before he receives it. Yikes! And signing consents, due to all the risks, etc.

He will be in this treatment for 10 weeks, she said, "If he can stand it that long." In fact, she said he may only get it once if it just overwhelms him.

How bad is it, he wanted to know. She said, the nausea will be manageable. That's not even the problem. The problem is the other side effects, such as fatigue like you've never known in your life, and bone pain from neutropenia, even though we give you every possible medicine to fight these effects.

So he gets to TRY IT JUST ONE time. And then they will decide if he is allowed to ever have it again.

Bill then asked a very salient question. He said we'd read that this drug has extreme side effects but that there is zero evidence that it extends life and that it is considered palliative care. ("Palliative care" means making the patient comfortable as he/she perishes.) He then said, "But we have anecdotal evidence that this isn't true. We heard from two people who had this drug, and it cured their cancer, and so why is it called palliative and non-life extending?"

She said, "What kind of cancer did they have?" He said, "Breast."

She said, "Exactly. You have Transitional Cell Carcinoma (TCC) and unfortunately (this was the scariest part of what she said) there is no known chemotherapy that cures TCC. You can only hope for remission. And there is only ONE study that shows that adriamycin [red devil] has any effect on TCC at ALL. So the chemo they're trying on you is based on only one study." Subtext: But for that one study, you would get no chemo at all [as in, nothing left to try].

So she did not deny that it is palliative. A last resort shot at another remission.

Well? Whatcha gonna do? Ya gotta go for it.

So Bill is planning to try to have the time of his life for the next two days. And Thursday, jump in and see if there are sharks and alligators. This drug is the one that, if it hits your skin, it burns a hole in it. And a lot of other stuff that I won't list, because poor ole Cowboy has to read this blog.

But, believe it or not, we are VERY happy with this outcome! We had nothing but horrible options, and this is the least horrible, so we actually are grateful! Everything's relative. As my friend Rick said, "There's nothing wrong with hope."

I'll start posting every day, beginning Thursday night, after the first "hit." The reactions build day by day over 14 days, so it will be a wild ride. After 14 days, he gets it again, if they let him continue with it.

Thank you for praying, thinking, loving, beaming, anything you did for us. It worked!

"God is great, Sabu. He plays with us." -- Out of Africa

Friday, May 18, 2012

MRI COMPLETE! YAY! No results, though

Just so you know, here's the MRI update: We called at 11 a.m. to find out why no one had called, and sure 'nuff, we'd been forgotten, so they said to come right now, and they'd fit us in.

So we rushed over and waited. They had an opening at 1. He was in for 45 minutes. Didn't mind the MRI claustrophobic aspect at all. Said he, in fact, liked it, and almost fell asleep!

They pulled him out and injected him with dye, then did a second round.

No results. No clues. No hints. No, "Looks clear to me." No "Uh-oh. We'd better take more pictures of THAT THING." Nothing. Total poker faces.

So we're home, and so happy to be here. I made us some hot decaf tea with organic honey and cream, and we were talking outside in the garden, and now he's gonna take a huge nap.

He tripped twice more today, but didn't fall. I don't feel good about leaving him unattended, till we get the results probably Monday afternoon. So he's stuck with me all weekend! :)

Thanks as always for praying for us, caring, and loving us. Things just keep timing out so perfectly, that one must admit, it looks like something is in our favor, even though Bill's health is giving us a wild pony ride right now.

Next post will be Monday evening after he meets with Onco. Unless something unexpected happens.

Love to all. And most of all: THANK YOU.
Bethie

Teeny Tiny Good News (No MRI Yet, Though)

Smidgeon of relief on 2 points:

1. He is 3 points under, on a 20-point scale, having Type 2 diabetes, so he only has pre-diabetes, and they will work with him after these other dramas are resolved, even though two people have told me diabetes can cause dizziness and falls and nausea.

2. On a 20-point scale, he is at 16.8 for having kidney failure, so he is still 3 points under "renal failure" but that number has gone to a bad place, and they'll have to address that, later, too.

3. The triglycerides of just under 600 when 150 is the max--that is still on the "bad" list. It means his liver isn't doing its job, so that will need dealing with.

But mainly, I wanted to cheer you up with: (a) It's not quite type 2 diabetes! yay!; and (2) it's not quite renal failure! yay!; and (3) all these problems can wait a little while, till next week when the Oncologists from Boone and Wake will convene over what to do, and does he qualify for chemo.

We're currently staring at the phone waiting for the call to go to Boone for the brain scan. We're calm. We're good. Our dogs are fine. The scan should be like an hour. So we're gonna have a great weekend! May God bless you for your love and care. And if you don't believe in God, may the Pastafarian Spaghetti Monster be your friend!

Love,
Beth (calm today)

Thursday, May 17, 2012

NOW WE HAVE EMERGENCY MRI!

The timing of this whole series of events would be enough to turn a hardcore atheist into at LEAST a very skeptical agnostic!

By chance, we HAPPENED to have a pre-existing Dr. apptment at 4 today, and last night, the falling down episodes began, with several crash-bang falls, and several almost-falls. This morning, Bill was bed-ridden due to a swirling head and tons of body pain from all the falls. Mixed with the nausea and trembling and numbness and NO REFLEXES upon testing at the doctor, there was immediately great concern that he'd either had a stroke, or a brain tumor. This all came together at the 4 pm dr. apptmt today which had been set last week, randomly, without knowing how badly he would need it!

Also at that apptmt, he was only SUPPOSED to get the results of his blood tests, but those were bad enough, even without all the drama of the falling and the brain issues! Now he has diabetes, kidney malfunction, liver malfunction, something else I haven't googled yet malfunction, AND his triglycerides (even on the re-test, with fasting) were almost 600 when the highest allowable score is 150. So he has some kind of bad problems.

So by 5, they told me to rush out of the clinic, tell the nurse to call the pharmacy and ask them to stay open and wait for us, we ripped over there about 50 mph in a 20 mph zone, and got some meds. Bill came home, is wiped out completely, and I ripped to the grocery store for desperately needed food, came home, made a healthy dinner (organic, pesticide-free, grass-fed, probably spa-tended, pedicured, manicured, and massaged ground beef (ridiculous!), cooked with fresh tomatoes and onions, and some rice and Greek salad), then cleaned up, and he is crashed in the bed.

He is terrified about this scan tomorrow. He tries to be brave and say, "They will find nothing. I know they will not." And I try to be brave and believe him. But the fact that we are going to be squeezed into the MRI schedule on the Friday before the Monday appointment at which time his local Oncologist DETERMINES WHETHER HE CAN OR CAN'T SURVIVE THE "RED DEVIL" CHEMO, is like a miracle! Without these blood test results, she could have easily approved him, and this chemo is fatal if administered to the wrong person!

That cheers him up, too, as you can well imagine--thinking about how dangerous this chemo is! (Not.)

So that was today. I'm fried. He's in bed. We are waiting for phone to ring any time tonight or early morning, telling us when to rush over for this squeeze-in MRI test. No idea what tomorrow will look like. I had to cancel my tomorrow's analyst appointment, due to all the chaos. It's okay. What I'm doing tomorrow helping Bill is WAY more important than having a Jungian doctor interpret my stupid dreams for an hour.

I'll post again tomorrow night. We might know something, tho probably not.

Love, gratitude and more love and more gratitude!

Bethie and BillyBob Cowboy

Wednesday, May 16, 2012

Bill had the ECHO, but has New Symptom

Short post. PROMISE!

1. He had his ECHO at the hospital today. Took from 9:30 till noon. I went in for it, and as soon as I saw his heart on the sonogram screen, I started crying and cried through the whole thing. Yes, I'm ridiculously emotional, but I started thinking: when you first are pregnant, the first thing they show you is that heart, and here is his beautiful and holy, godly, kind, generous, and virtuous heart, still beating after all these years. Then I thought, this is the heart that loves me, the heart I live in, the core of the life that means everything to me (his life), and look how fragile and funny it looks, moving all around, like a disco dancer, I was thinking. It doesn't just beat. It moves all over the place. I didn't know that. At first I felt horror, that it was squiggling all over. And I was scared. But then I thought, this is the altar of his life, and I'm looking at it, and I just wept and wept. Silently, luckily. Or the tech might have thrown me out. I put my sunglasses on, even tho the room was dark, and just cried. The test took an hour, and the results will be sent to Onco Bronco in time for Monday's appointment. If his heart isn't up to par (and he does have a 2nd degree blockage), he won't qualify for the ((((((("red devil"))))))) chemo, then not sure where we will go from there.

2. NEW SYMPTOM: Falling! He started falling today. He fell in the downstairs bathroom and called for me, but was up before I could get there. But then at 7, he got up from bed for dinner (grilled talapia, broccoli, rice, corn) and he started to fall by the bed, caught himself, but then fell HORRIBLY, landing full body on a low bedside table, crashing the lamp to smithereens, spilling his water, knocking everything off the table, and unable to get up till I came and helped him. We made a big joke about it, after seeing the lamp crushed into its new Dr. Seuss reincarnation, but he said he wants a brain scan now, because nothing like this has ever happened in his whole life. He said his body simply wouldn't obey his commands; it just collapsed. Had he missed the table, it could have been REALLY BAD. But then, an hour later, he almost fell AGAIN walking across the room. So we are going to have that checked. I brought up his walker (from the days of Duke) and set it up for him, and now he will keep that around, till he feels steadier.

Tomorrow, he sees a doctor about his blood test results. The last results were so terrible, showing unbelievable triglycerides, which could indicate liver trouble, so he had to get re-tested. Results tomorrow.

Fun never stops. Thank you for caring, for reading this, for praying for him.

Love to all,
Bethie

Monday, May 14, 2012

Better News: Beth's Apology at Gunpoint for OVERSTATING THE CASE

First, judging by the emails we got from the last blog, I think I may have overstated the case. Either that, or from where we are, it doesn't look that bleak.

Bill started reading the email responses, before he had read the blog, and after he'd read a couple, he said, "Be-e-e-e-e-th????????? What HAPpened here? Were you a trifle hyperbolic in that blog post?"

See, I have been KNOWN to fall to hyperbole (my own brother constantly reminds people to "take the square root of everything Beth says,") but in this case, I thought I actually hadn't exaggerated anything. I thought that if anything, Bill's and my ever-increasing skills at denial had made us oblivious to how bad our situation would look to a non-denying outsider.

So we both read the blog, and he said he couldn't find any fact that was incorrect, any exaggeration. But he said that somehow the overall tone I had created was SO VERY bleak that I must have done something with my words to overstate it. He just couldn't see exactly what.

So, the good news is that I must have overstated the situation. We are actually walking around the house in good moods quite a bit of the time. Bill is hungry at dinner SOMETIMES, and his dramatic nausea waxes and wanes.

The main piece of news, outside of my apology at gunpoint in the form of typing this retraction of my previous TONE, is that the chemo clinic just called, and they were concerned at how long it has been since the tumor was biopsied and the chemo would begin.

Well, YEAH!

So, thankfully, they noticed that. Today, there is another teleconference between the very nice (excuse me, I just had to cough) Onco Bronco and our new Wake Oncologist. The theme will be, "Can't Dr. Drennan start chemo ASAP?"

They're gonna call back, but they fully expect to receive permission to start Bill on May 21st with the "red devil" chemo.

How bout I quit calling it that! When I used to belong to a Pentecostal Church (I've been almost everything but Mormon), I would have gotten prayed over--and FAST!--for using a term like "red devil."

Okay. Let's call it Adriamycin.

For the strong of heart, here's a link about that lovely drug. Click here to read about Adriamycin

Now see? Didn't I have a pleasant, upbeat, and only mildly sarcastic tone throughout this emotionally minimalist post?

God is good, no matter what. Thank you for your prayers, and I'm sure the Cowboy is doing as well as he is, because your love and efforts on his behalf availeth much. (I'm a KJV-er myself. :)

Cowboy Bill and Diamond Lil




Saturday, May 12, 2012

Troubles, but Not Compared to Other People's

This is Sunday's post, out a little early.

Just a few points to this one.

1. We found out the appointment at Seby Jones Cancer Center in Boone on Monday the 21st is NOT for chemo. It's just a meeting with the Onco Bronco.
Fifteen minutes and $90 charged to the taxpayers. Ridiculous.

2. Bill is getting gradually worse, and it's upsetting us both. Every day, he is a little worse than the day before, and chemo hasn't even started. He doesn't have his ECHO heart test till next week. But here are his deteriorations:

  • He is nauseous not only till noon, but now every evening and sometimes can't even eat.
  • He has sudden attacks of.....having to run to a facility....at ALL hours of the day now and part of evenings and early morning. Formerly, that was just mid-morning.
  • He is sleeping more and more every day, sometimes multiple long naps in a day, PLUS sleeping all night.
  • His spine hurts, his whole spine, in a way that he says it has never hurt before.
  • His hip and knee hurt.
  • He has JUST enough power to get his grading done each day, and is thankfully getting closer to being finished with that.
  • There's probably more, but I can't think of it. He's using every medicine he has, but it isn't helping.
We are both getting so discouraged and more scared. I try to keep my mood up, but it's hard, and I am having trouble not being depressed, even after talking to friends on Facebook, which usually is my save-all plan. Bill is not at ALL emotional like I am, but he is getting discouraged, and even depressed, which he has never been in his whole life.

The thing is, we have two friends who are going through something so infinitely worse than this, that it is almost rude to list our problems. They are living through a drama that would make Chuck Norris lie down and weep. So in light of that, we have no right to complain.

But it's a kinda blue day here, so I thought I'd just tell the truth.

There's nothing anyone can do, and if you email, you might not get a reply, but it doesn't mean we didn't both LOVE your email. We're just in such a funk over here.

Thank you for caring, loving us, praying and wishing us well. But there are people in MUCH worse situations. So if you have limited prayer time, pray for those people in worse situations. We're not even in the crisis zone yet.

Hugs and gratitude,
A wilted diamond Lil

Monday, May 7, 2012

We Now Have Dates to Begin the War

The excellent chemo clinic in Boone called this morning with two dates for Bill.

May 16th, he will get his baseline "ECHO"*, and on Monday, May 21, he will get his first chemo. I believe that will be the dreaded "red devil." But recently, we have heard such great things about red devil that our horror of it has almost changed to hope for at least a good remission. If Bill can stand the drug.

Several wonderful friends--and even one stranger!--wrote to us saying that the "red devil" wasn't nearly as bad as we'd read, and that there are lot of protective things that can be done to minimize the side effects. Two of these people have had this drug, and it killed their cancers.

Bill's classes are finished. Now he just has to grade 8 million papers by May 15. But at least he can stay home. Today he feels very ill--feverish, achy, extremely nauseous, tired, "just very sick" he says, to describe it to me. He's staying in bed and going to try to sleep a lot of the day away.

I asked if I could bring in a chair and sit by his bedside and watch over him (that was after he asked me to check him while he is sleeping and make sure he is still alive! That's how bad he feels!), but he said no chair; said he would never get to sleep with me staring at him. hahah. "I'll look away!" I said. Nope.

So I'm on a couch outside the room, ten feet from him, NOT staring, and I will watch/listen over him from here. Thank you for reading this. I really don't think much will happen between now and the ECHO. But I might post on Sunday, just to say hi. Thank you for your prayers and love and being there (and Gwen, thank you for the home made bread! He went crazy!)(And Bill's beloved friends at church, thank you for all you did for him yesterday! He was elated!)(Cliff, the flowers remain beautiful!)(Dave, the choral CD is amazing!)(Love bombing friends, which is ALL of you: you're sustaining our boy!).

Love to you all. Cowboy and Cowgirl

*An echocardiogram, often referred to in the medical community as a cardiac ECHO or simply anECHO, is a sonogram of the heart. (It is not abbreviated as ECG, which in medicine usually refers to an electrocardiogram.) Also known as a cardiac ultrasound, it uses standard ultrasound techniques to image two-dimensional slices of the heart. The latest ultrasound systems now employ 3D real-time imaging.

Wednesday, May 2, 2012

Uh Oh. The So-Called "Red Devil" Strikes

In a world of incompetent people, it is enough to make you think you're dreaming when you encounter someone SO competent, SO efficient, SO memory-perfect, SO caring, SO hard working, SO intelligent, in the medical world, as Paul, the Head of the Chemo Center in Boone. Paul started working with us yesterday, and in less than 3 hours of work time, he had caused EVERYTHING to begin for Bill, including an Onco-to-Onco phone conference, appointment settings, baseline test arrangements, information counseling for Bill, from Paul himself, and calling us back within FIVE MINUTES every time we leave him a message! This man is beyond anything I have EVER SEEN in any place of employment. He's hard to BELIEVE!

Standing ovation for Paul.

Now for the news: The Onco plan is that Bill will start out with two drugs (there are six drugs planned for the whole strategy). One is Gemzar (he's had before; easy to handle), but the new one, Adriamycin, is nicknamed "the red devil"--as I've mentioned before. It is Doxyrubicin (see earlier post for more info on Doxy, if interested).

[New religion NOT to join: Oncodoxy.]

They had to warn Bill: if a drop of it hits your skin, it burns a hole in it. It also oozes out of your palms and feet and makes them peel. It's wicked. Yet they put it into his veins through his under-skin port. Then, it disintegrates the heart muscle. So he has to have continuous EKGs and if his heart starts falling apart, he stops that drug. He's getting a baseline EKG soon.

More fun with the red devil:  Paul said, "You're not having any nausea problems NOW are you?" Uh. Whoops. It's called Almost Throwing Up 7 days a week from 8 to noon. Paul said that's absolutely abnormal for a year after chemo, and something else is causing it. Bill said he doesn't want to know what's causing it, as he's got enough to worry about already. So they are going to try new drugs for his nausea BEFORE the red devil chemo.

That's because this drug almost guarantees that you will be throwing up through the whole chemo. And lose your hair. While banging up your heart muscle.

Nice.

Poor Cowboy is a nervous wreck today. He has to go to his last set of meetings and student encounters at ASU this afternoon, so he's trying to calm down, but he can't even hold the newspaper, he is so shaky with anxiety. He said he read an entire newspaper article just now and has no idea what it said. He can't even think, he's so worried.

You can't blame Paul. Paul has that job--to tell the truth, so that Bill won't get blindsided.

So today, I am staying home by the phone, and the clinic will be calling and setting things up.

Cowboy, being a stubborn cowboy, refuses to start chemo until after May 15th, so he can finish grading all the essays and portfolios and get the grades in.

No one but Cowboy thinks waiting that long is a good idea, because all this time that tumor is in there shooting out cells. But you can't tell Cowboy anything much. He does his cowboy thing.

If you're a praying soul, please pray for him. If you're an Anything Else, please do what you do for him. He will feel your love, bottom line, and I will, too.

Love to you all, and I will speedily update at the next development.