Monday, July 30, 2012

Scan results, short form, from hospital

Medium news, not good, not bad. Tumor is still sitting there, but hasn't spread. Oncologist thought it was bigger. Radiologist thought it was smaller. Not much size change. Bill is still considered incurable and this is still considered palliative care, meaning extending his life but not curing the cancer, is no longer the aim. Haven't read path report yet, but the bottom line was that while they were watching some areas, there was no evidence of new metastasis!!!!!

They can't continue the red devil as it is too dangerous to heart, and he needs one more week off before starting new chemo. Then a scan in a few weeks to see if new chemo is working.

The Oncologist here, Dr Thomas, wished the tumor were gone or noticeably smaller, but said on the optimistic side, it could have grown triple size if not for the red devil, so no way to tell.

He confirmed that there is  no test showing any chemo that works on Bill's kind of cancer, so that's a downer. But they are just throwing things at it to keep fighting to keep him alive. Cancer tumors like Bill's are so smart that they adapt to chemo and become immune to it! So they have to keep switching.

I asked if it he agreed with months to live versus years, and he said yes, he agree but he was acting upbeat and said, you know, all kinds of good things can come along, such as let's be happy that the tumor didn't grow rather than scared that it didn't get hurt as much as they wanted from the red devil.

In short, couldve been so much worse. We are rushing right now to go home, so I'll write more tonight after I read the radiology report which the Oncologist hasn't read all of yet. Talk to you tonight. Your prayers and love are surrounding us. Thank you sooooooo much, and I wanted to share this kind of good news of today's report, even tho Bill is being a brat about telling me to hurry up. hahahahahah Love you all! I have not proofread this, so don't hold typos against me. We're happy overall! Cdve been bettter, Cdve been much worse, tho.

Sunday, July 29, 2012

Sunday: Monday is our HUGE LIFE-CHANGING DAY!

We just finished having the greatest weekend imaginable. Bill's daughter/my stepdaughter came Friday night and stayed with us till this afternoon.

Emma was an absolute joy. She is so FUNNY, and SO beautiful, and has a calm spirit, and she and her dad and me (I tried to judge how much time to give them alone and how much time to join in) had the most relaxing weekend, with a lot of sitting outside in white Adirondack chairs in my crazy Dr. Seuss garden (bizarre flowers, butterflies, and hummingbirds going in every direction) just talking.

Last night, we went to dinner at the 5-star restaurant in town (Jimmy Crippens' for my North Miami friends who knew Jimmy there), and it was SO GOOD. Then we came home and sat under the stars and the three-quarter moon till way past dark, surrounded by crickets, while Emma gave us the most magical trip back through her childhood in our family, telling us every great memory she thought of, and reminding us of the fun, funny, crazy and silly things we did as a family.

As Emma talked, Bill and I went into a state of transcendent bliss. As parents, there is nothing you want more than to know that your parenting "took" and that the decades of effort you gave to creating an enchanting childhood for your little ones are recalled as delightful to the children you did it for.

Neither of us expected such an evening. We are still going over and over everything she said, as she's now driving back to Richmond, and we are both finding little tears of joy falling at the gift this child gave to us last night.

As you can imagine, Bill is feeling that his whole life has been validated, his whole career, his every labor, by having helped to raise this beautiful, loving, wise, intelligent, compassionate human being who loves us as much as we love her.

I'm not sure we've ever had such an incandescent experience in our lives as last night.

She wasn't even trying to "make us feel" anything. She was just reminiscing, and we were given the gift of sitting under those stars together, the three of us, while she did this, letting Bill hear his whole history as a father going past on Emma's words, like cricket songs passing through the garden on a little choo-choo train track, each train car being one more story connected to one more story, to one more story, all from our family history, remembered for us by Emma.

Did she know what she was doing? Did she know she just fulfilled her father's entire life last night? Maybe. Or does love have a way of finding the exact little train track it needs to find, through the exact garden, on the exact starry night, at the exact moment in time?

But on to less luminous adventures: Tomorrow we leave early for Winston Salem, and by 2:30 (or 4 if the doctor is late), we will know what is inside Bill's torso. They aren't testing anything but shoulders down to pelvis. I wish he could have a tip to toe scan, but maybe it's a Medicare cutback.

And no matter what the scan shows*[see note below], he starts 12 weeks of chemo three days later, taking us into November. We will probably be more assertive in getting the doctor to give us a "how much time" prognosis tomorrow, even if Bill chooses to step out of the room. I have to have FACTS to go through this MY way, and I will fight for them if I have to.

Plus, if Bill is tumor-free, then that's a new remission. If he's not, well, maybe the next chemo (all new stuff) will knock back any tumor.

Tomorrow's scan results will go up the SECOND we get home (7 or so). I don't have a phone with which I can post from the car. If POSSIBLE, I will open my computer briefly at Wake Forest after we get the results, after 2:30 or so, and I could post a blog entry of a sentence before we start the drive home. We'll see. If we're stunned with bad news, we might even spend the night in Winston and drive home Tuesday when we're not both in mortal shock. We just don't know what to expect. Either way, a blog will appear by Monday night.

*[Here's the ending note: There is a configuration of facts that would cause Bill to stop the chemo and enjoy the time he has, with nights like Emma gave us last night, via Hospice at home and the famous Hospice no-pain cocktails. We'll let you know, of course.]


And thank you, Emma, more than you could possibly understand.

Sunday, July 22, 2012

Sunday: Can Beth Write a One-Sentence Blog?

It's Sunday, and even though there is nothing to tell you, I'm posting so you won't worry, and the only thing that's been wrong has been severe nausea (and some other things I can't mention on the blog just for privacy's sake) and now a low fever of just under one hundred, but these are normal for the weekend after a dose, so now you know it's possible for Beth to write a blog that is only one sentence long. Wow! (SHOOT! I BLEW IT!)

Thursday, July 19, 2012

New Info, But No Drama--Maybe

That there is a pitcha of me an cowboy. I'm the white dog who can't quit kissin him. In the third picture, he looks purty darn happy. Then I kiss him again cause he's just SO cute!

Today Brave Billy got his FINAL "red devil". He's hopped up on steroids right now and feels great from the anti-nausea IVs. He will feel fantastic till Saturday, at which time he will experience his own personal zombie apocalypse with a little of the Book of Revelation thrown in. Poor baby.

DATE FOR SCAN THAT WILL DETERMINE ABOUT A MILLION THINGS IN OUR LIVES: JULY 30TH, A MONDAY. We get the scan around noon in Winston. At 2:30, we will be told by Dr. Thomas, our Wake Forest Oncologist who replaced our beloved Dr. Torti, what the CT scan showed.


But, here was a surprise. We were handed our chemo schedule as we left today. I thought, "Chemo schedule? I thought chemo was dependent on what the scan shows." Hmmm. But apparently, no matter what the scan shows: (a) no tumor; or (b) a shrunken tumor; or (c) a tumor that has flourished mightily under the red devil and has grown into its own township, complete with a school system and shopping mall, and its own daily newspaper --no matter which of those the scan shows, they have Bill scheduled for TWELVE WEEKS OF MORE CHEMO! ARGH!

That's three months. ONCE A WEEK! OMGosh. Can he TAKE it? And it's all new drugs: carboplatin and taxol. So we have NO idea yet what these *new* drugs will do to his poor tired hairless nauseated body.

As they said, there are NO drugs known to science that can fight bladder cancer of his type, so they are just throwing darts blindfolded at this point, to be nice. Pin the chemo drug on the donkey.

Lots of folks have said they'd vote for him to quit chemo and have a great time as long as he can. But good luck convincing the ole cowboy of anything. He wants to fight like Chuck Norris in a rodeo full of foam-at-the-mouth bulls. He just wants to fight, fight, fight. 

Well, he gets to make the call. I'll be at his side cheering him on, no matter what kind of path he chooses.

So, in summary: Monday, July 30: scan at Wake Forest. Results at 2:30 pm. Interesting drive home, that will be, I am sure.

Then, two days later, start the new 3-month, once a week regimen of all new drugs. Of course, he can back out if he wants, after we see the scan results.

He's more and more excited about his baby girl coming to visit (well, she can be  29 and still be his baby girl)--we both are excited. Emma Jane is GREAT with sickbed scenarios and got plenty of practice with the cowboy when he was at Duke for 800 years in 2010.

That's all for now. Thank you for your beautiful, deeply touching love letters, and well wishes. You know we can't answer them all, but it doesn't mean we don't read each one over and over and over and feel our hearts lifted up so high by your endless patience and love and PRAYER!

Next post will be this coming Sunday, just to keep on my schedule. Love to you all. Go kiss a puppy. It's fun.

Sunday, July 15, 2012

No Bad News! Yay!

Since it's Sunday, I'm just reporting that our cowboy is feeling decent today. No big dramas, no terrible passages. There's actually no news!

We've gotten the most amazingly loving, expressive, and compassionate messages from everyone. I don't think ANYTHING makes us feel better than a love note. And even tho I'm not too great at replying, I know you don't mind, and you understand, even if you don't hear back. And please KNOW how important your love is to us right now.

Bill's daughter is coming in a couple of weeks, and we are very excited about that! He's terribly worried about how sick he will be while she is here, and that she may have to pull a chair up to his bedside, but she understands. He can usually walk around and sit up for an hour or so per day. It won't matter. His seeing her is just exhilarating him no end! It's so lovely to witness family love, something none of us should ever take for granted, as not everyone has it! And some have lost it. Bless those people, and God help them.

The next post will occur on the evening of whatever day Bill has chemo this week. We don't have the appointment yet. Till then, if you hear nothing, assume all is going as usual.

Thank you for your prayers and love. We're fighting this--with you--all the way!

Friday, July 13, 2012

Buckle Your Seat Belts, and Promise Not to Kwy!

No matter what I say here, you KNOW there is always hope, always the quirky miracle, always the better turnout than the medics told you about, always the surprise good thing that you didn't see coming.

Hold on to THAT while I tell you what happened today.

The Oncologist (in agreement with the main Oncologist at Wake Forest Hospital 2 hours away), decided to break out the news, unedited and unafraid.

Unafraid, apparently, of us both fainting away onto the floor when she said it. Which we almost did.

Here it is: Bill's cancer is now considered completely incurable, and he will not beat it, and the only thing they can do now is give him random-guess selections of chemo meds in the hope that these random stabs in the dark at chemo choices might--MIGHT--slow down the spread of the cancer and extend his life. (Reason they have to guess blindly: Type 3, Stage IV, highest level aggression bladder cancer has never been cured, and no studies have been done, because the disease, once metastasized, is always considered incurable.)

What are the chances that chemo is going to hurt this cancer?

At best, 50-50, she said.

And if the chemo doesn't beat the cancer?

No matter what the upcoming scan shows, Bill has to have 12 more weeks (yeah, three MONTHS) of (ready?) ONCE A WEEK chemo (no more red devil, at least; it will be carboplatin and taxol).


He can give up, enter Hospice care at home, and live out his life without the illnesses of chemo, under complete pain control and around-the-clock care at home.


Hospice accepts only patients who have 6 months or fewer to live. So the way *I* do the math (pessimistically), this adds up to: At best, a 50-50 chance that Bill has 6 months to live, BUT ALSO the same 50-50 chance that he could last even some "years."

I said, "Ten years?"

She said, "No. But if the chemo is working, it could be years rather than months. There is no way to guess closer than that, until we see the scan, which I'm setting up for you today." (The scan will probably happen in the next couple of weeks. I hope I'm on intravenous sedatives or chloroform when the results from that scan are delivered to us! Oh Lordie!)

So, Bill gets (we didn't know this) ONE MORE dose of red devil next week, THEN goes to Winston for the scan, with results within one hour (!) and  depending on those results, he can decide between chemo and Hospice.

I've been reading things that have these zero-chance prognosis statements for  years now, but not telling Bill. Bill happily thought he was headed for a cure. So he was absolutely SHOCKED. I could say "devastated" and not be far off base. I, however, had not had any professional put it so bluntly, and out of nowhere. We thought we were just getting a blood test, not a blooming LIFE EXPECTANCY STATEMENT today.

Wow, sort of a slam in the head with a two by four.

So we came home VERY QUIETLY. At first, we were both in twilight zone, shock. Then we started talking, and even joking, and now we are deciding his strategy for what to do with the rest of his life. He wants to see his beloved and deeply missed Baraboo, Wisconsin, friends once more (Kenny, you most of all); wants to take his daughter to Vermont to see her grandparents' graves; and he wants to see the Pacific ocean just once in his life. (This saddens me. Look how little he wants.)

He also said this, and I know a lot of you will love this: "The one thing the oncologists aren't putting into the equation is the power of prayer."

That's my boy! Always optimistic!

We will definitely post on the same day that we get ANY information from here on out.

Thank you all for standing with us during this long and crazy rodeo. Bill isn't ABOUT to give up wrassling this ole bull.

Wednesday, July 11, 2012

Cowboy Bill feeling better & better!

The above photo is explained at the end.

Since a couple of people have written to me, a bit worried about having not heard from me for a while, I thought I'd just let you know that Bill is doing GREAT!

He is mastering his nausea and other problems, and knowing that there will be at LEAST a long break before more chemo, and maybe no more at all for now, is a huge uplifting factor for us both.

Friday (two days from now), I will post again after we meet with Bronco Onco (here is her picture)

 and find out when the MRI will take place in Winston Salem. The MRI won't be any time soon, so be ready for a slow pony ride to the next outpost.

I'll always post on Sundays, even if there's no news.

If there's bad news, I'll always post that night.

So if you hear nothing, it means all it well!

Unless space junk falls on our house like so:

and mushes us both, and more blogs at all! (The man in the photo is saying, "Beth? Bill? Are you under there? Can you hear me? It's Sunday! A blog was promised!")

Love and THANK YOU for all you've done. Special thanks to Mariola who went to Greece (!) and lit candles for Bill in Orthodox Churches. Bill is beside himself with delight about that. We even got a picture of one. Here it is. The candle on the far right is the one she lit for Bill. Mariola, God bless you!!!!!

Sunday, July 8, 2012

BILL FEELS GOOD!!!!!!!!!!!!!!!!!

Need I say more?

Our cowboy is feeling actually "GOOD" right now! He ate a pot pie and some ice cream, and he is sooooooooooo happy to feel better!

I promised I'd tell you if that happened, and it did! Miracle!


Correction! (Cowboy Not Happy Bout Sumpn I Said!)

I just woke up, but even before a sip of coffee, I have to write a REEEEEEALLY fast correction/clarification. And my mom has to sign it before the principal will accept it.

Apparently, the cowboy was awake half the night, extremely unhappy with me putting into the blog his having said, "I want to die."

He said that with so many people praying for him, what must that look like? He felt it was a "slap in the face" of his friends.

Uh oh! I'm in the naughty corner! (I tried to get out of it by saying, "Well all Christians TECHNICALLY want to die, 'cause heaven is better!" He was NOT buying it. Lawyerly argument attempt: EPIC FAIL.)

So here's the clarification: He did NOT mean it literally. It was ONLY an expression of how bad he felt. He said to tell you it's like something you'd say if you had the flu and both ends were flying, and you be in the middle of it and say, NOT LITERALLY, "I wanna die!"


It's even something you might say if you had to carry in too many groceries and put them away on a hot day. "I wanna die. And I'm never eating again. Grocery shopping isn't worth it!" Naturally, I say this almost every time I have to put the groceries away. Brat that I am.

So I hope you will all forgive me for the mis-step; I am known for being a Drama Queen and drawing some things without their context.

Final update: Bill wants to live! Hooray!!!!!!!!!!!! And thank you for your prayers. If you sent any up with that line in it, God will know how to edit it.

Beth in the Corner

Saturday, July 7, 2012

Worst Day Ever. *frown*

I suppose that even though this is Saturday, this will count as the regular Sunday post. But if he's lots better on Sunday, I'll post again, just so no one has to worry.

I guess I'd say, to our praying friends: Bill needs prayer. To our non-praying friends, Bill needs your good thoughts. (This doesn't make me a relativist. This makes me someone who loves every friend just the same, because every life is equally precious.)

Bill has never been this sick, except when he was in Intensive Care after his roter-rooter surgery at Duke.

There's no way to give you enough facts to present even an impressionistic rendering of the way he is sick. But here's the best I can do. His nausea is nearly unendurable. He feels like he has the full blown flu, aches, exhaustion, depression, misery. "I'm ready to die," he says.

Kicker: He can't even READ. He can't look at computer or TV. He's so sick that it makes him ill to even take in thought. He doesn't want me near him. He just lies in his bed in the dark with his eyes closed and says, "Beth, I'm just so sick," during my brief visits with food, water or medicines.

He could only eat scrambled eggs today. He loves how I cook them. He had one for breakfast, one for dinner. And some chocolate protein drink to try to stop his stomach pain.

I feel sure this is just ("just?") the red devil doing its dirty, cumulative work, and we all hope that his tumor has met its match. I'll tell you the MINUTE we know when that MRI will be. It can't be soon enough for me.

His next appointment is Friday, but I have a feeling he may need some hospital time before then, if he doesn't turn around. He needs anti-nausea IVs--the pills and suppositories aren't working. He needs food and fluids. He probably needs morphine drip. I wouldn't want this to happen to a dog, much less my beautiful, brilliant, loving, holy, Christian, hard-working, courageous husband. In just unabating misery.

I know there are some of you that may not believe I should say all this. Some people--it's a personal choice--believe in showing a strong face, no matter what. They might call this whining or complaining or self-pitying.

But I do it for one reason. Now you know how to pray for him. (Thanks for that realization, Richard H., one of Bill's beloved church friends.)

I will write again the minute he starts feeling better, as I know this kind of post stresses and upsets a lot of people. It's hard to know what I should do, but as my friend Craig says, "When you're in a situation like this, remember that whatever you do is right." Thank you Craig (he lost his wife to cancer. He is my standby comfort at all times, and my advisor. He volunteers for Hospice in NY.).

Then there is Clifford whose hair is now 1/16th of an inch long, in solidarity with Bill's humiliating hair loss.

Then there is YOU who have read this far, this long, this often, and with this much love. I love you for loving Bill as if you are the only person in the whole wide world. Thank you, with all my sad heart. No jokes from me today.


Thursday, July 5, 2012

Quick Update--More Later

Bill had his chemo today (his last one, depending on the MRI results! No date set for MRI yet). Lots of anti-nausea meds and steroids. He fell asleep in the chair! Then the red devil, and finally the Gemcitabine aka Gemzar.

As always, he feels GREAT right after chemo, because it's the only time his nausea leaves. And the steroids make him so high energy. We were even able to go out to eat with friends tonight! That's kind of amazing.

A beautiful moment at the end of his session. A young blond woman in the next chair, whose cancer has come back (so sad, pray for her, no name) said, "Excuse me, but I couldn't help overhearing your talk about nausea. I had the same problem and finally they gave me phenergen, and it stopped the whole problem instantly!" Oh! We thanked her profusely. What an angel! Gosh, I was SO MOVED by her kindness! I have a lump in my throat just thinking of it now!

So we asked Dr. Oncologist's nurse to ask Dr. Onco, and behold! A prescription has been called into our pharmacy for tomorrow! We are elated with HOPE!

Bill will soon lose any last scraggles of individual hairs that are clinging on, but his moutache seems secure. He said (and made me laugh), "I'm afraid I'm going to sneeze and my whole moustache is going to fly off!" It's all he has left.

I will write again on Sunday. He'll have a good Friday, but Saturday will crash, and probably have a difficult weekend. Then again, we're never sure.

But I will write on Sunday, no matter what is going on. Thank you waterfalls of gratitude for your loving thoughts, prayers, and good wishes for the Cowboy.

I'd make some jokes here, but it's almost midnight!

Oh, well, okay, here's just ONE: "When I die, I hope I go peacefully, quietly, and in my sleep, like my grandpa died. Not screaming hysterically like the passengers in his car."

Love you all!
Bethie and Billy

Sunday, July 1, 2012

Bill is OK. And That's Good Enough for Today.

Our favorite cowboy isn't great today.

But he's almost OK.

And we're grateful for that.

We expected him to be having a good day today. In fact, he went to church before I was even awake. Left me a note by the coffee maker. I thought, well, he must feel great!

But when he came home, he looked kinda pummeled. His color is yellowish now, his lil head is pretty much a hair-free zone, tho he still has some moustache left, but no beard. Entering the house, he ran for the bed, conked out, and now is moving slowly, saying he feels flu-like symptoms (it's not the flu, tho), and complete exhaustion.

But he said to add (for church friends) that he LOVED sitting by his good friend Richard this morning.

Oh. Now he is on a roll. He's telling me what to write. I'll let him dictate:

"Tell them that probably my miseries today have a lot to do with the heat, cuz we don't have a/c. That's all. Nothin else from me. And you usually get nuthin. This time you got TWO tidbits."

That was verbatim. Well, must be my lucky day!

Upcoming Billybob drama: Thursday, the day after the 4th, he will get another dose of the devil. Thereafter, no more chemo till an MRI (at Wake Forest Baptist Hosp) tells us if it has been working or not.

It's funny: he has had a place on the back of his leg for ten years that I always swore was some kind of skin cancer, but some GP doctor in Wisconsin poo-poo'd that, with no test or biopsy. A big red circle with a life of its own--I think it looked like squamous cell. Well, since he started the red devil, darned if that thing didn't disappear! Isn't that crazy?

Also hope it's a good sign that the Red Devil is doing a Rope-A-Dope on his other tumor, the one under his heart and that's inoperable.

(Are you old enough to know what "Rope-A-Dope" is? Ha!!! Here's a hint:)

Love to you all, and thank you for tuning in. We love you and are so grateful for your prayers and your care and your love and your thoughts.