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 (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 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, 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: 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: 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

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

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

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