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

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)

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

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

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

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

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.

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.