Thursday, November 22, 2012

Thanksgiving Every Which Way

As a young friend of mine pointed out recently, it is highly amusing to consider that we spend a whole day being thankful for what we DO have, and the very next day, we stampede stores at dawn so we can buy all the things we DON'T have.

But aw, what the heck. It's cute. As long as it's not ME who is in any line anywhere any time before 10 a.m. rather than lounging around at home, putting off important tasks while sipping on my mason jar of coffee.

Bill and I just wanted to say that on this day we are thankful for: (Interruption)

Bet you thought we'd go one of several routes right there. GUESS.

Bill and I just wanted to say that:

(A) on this day we are thankful for doctors and smiling nurses;

(B) on this day we are thankful for starting the 4th year of stayin' alive;

(C) on this day we are thankful for being almost in remission;

(D) on this day we are thankful for chemo being over;

(E) on this day we are thankful for 1/3 of our children being with us;

(F) on this day we are thankful that the other 2/3 stayed away if they can't act nice JUST KIDDIN;

(G) on this day we are thankful for, okay, list is getting too long, let's get to the end of our guessing game....thankful for hedgehogs, parmesan cheese, conestogas, the word "gubernatorial," penguins, wasabi almonds, cute puppies,  manhole covers (EXTRA thanks for those!), ladders, spare tires, and those little gadgets that break the glass if your car goes underwater.

If you picked (G) you were correct. But you were also correct if you picked any or all of the other ones, but you FAILED THE TEST COMPLETELY if you didn't notice that one blessing was missing: chihuahuas dressed up like Paris Hilton.

No. Seriously, now. One blessing was missing: you.

You are what we are thankful for today with every heartbeat, every breath, every laugh, every, okay, glass of bubbly, every bite of turkey, and every smile.

YOU are the best friends we have ever had in our entire lives, and THANK YOU for the joy you carry with you wherever you go, most especially into our little corner.

Happy Thanksgiving. We love you.

Thursday, November 8, 2012

Sorry About That Last Blog: Here's the Correction

I guess I crossed over the appropriate "Line of Bleak" in the last post, so I'm getting rid of that post. You can feel free to delete it from your inbox. I apologize to those of you I inadvertently upset.

Here's the new cleaned up report:

Hi everyone!

Thanks for reading the blog!

Bill is stable. No news. We're having a scan soon at Wake. I'll post the results. Till then, we look forward to Bill feeling a little better each day, now that his 12 weeks of chemo are over. No further plans exist right now for treatment. After Wake, we will know more, and I will post.

Love to all! Hugs!
Diamond Lil and the Cowpoke :)

Sunday, September 23, 2012

The Sunday Update

I haven't posted because not much is new. We are on a repetitive pattern through mid-November of weekly chemo (carboplatin and taxol), and the occasional extra bag of water or magnesium. Bill's lows are much less low, the farther we get from the Doxyrubicin days. His hair is grown back in. It's suddenly very thick and very fine and platinum but with black hair mixed in. It's curly on the sides and straight in the back. Even his goatee is back, along with eyebrows and eyelashes. He's quite happy about this.

He's got small ongoing bodily weirdnesses evidencing themselves from time to time, but no one seems worried, so he just rolls along. His mornings are kind of horrible, but his afternoons and evenings are almost normal.

As for me, I went through some kind of neutron-bomb burnout for a few weeks, and now that it has passed, I see that it was a healthy and necessary development and that it brought me into balance. Before The Burnout, I think I cared too much about every little thing. After burnout, I care just the right amount, instead of too much, and now I can deal with it WITHOUT the obsession I had before. The result is a less fritzy caregiver who is less hysterical all the time, and who can now proceed calmly (MUCH more calmly than the first three years).


Farewell for a while. I'll write in a couple of weeks, unless something dramatic happens. Love and gratitude, from you know who!


PS For the praying folks among you, and the others, if you wanna give it a shot: please pray for our faithful friend T, a brilliant teacher and gifted, loving leader in Bill's church, and truly a saint, who is having rather monumental surgery on the 25th. And if you could, please pray for his wife, A, who has stood by us, as if we were her own blood kin, ministering to both Bill and to me with emails, letters, books, cards, pictures, home made custard, just love bombing us all these years of Bill's illness. Thank you soooooooo much. Bill says if you only have time for one prayer that day, make it for T and A--you can skip Bill. :)



Thursday, September 13, 2012

MEH . . . .


(This preamble is by Beth. I am french fried, circuits blown, burned out, burned up, exhausted, and falling down on the job. But don't feel sorry for me; feel it for Bill. Bill is going through it too, and he's got cancer and chemo, in addition, on HIS shoulders! So tonight Bill wrote the blog for you. Here he is.)

Bill here.  Short entry tonight--Beth's  having a truly lousy reaction to yesterday's flu shot, and I devoutly believe in taking care of the caretaker.

Chemo today, preceded by a chat with Onco Bronco, who was actually very helpful.  The CT scan report is in from Wake, and all is okay, if not great:  the tumors (turns out there are two, not one) have *not* grown, so the chemo regime seems to be working.  For those of you keeping score, today's was the fifth round of twelve drips, dragging on into grey November.

Early tomorrow, I go to the hospital to have them fiddle with my "power port," the surgically-implanted device in my shoulder through which blood is drawn and chemicals are injected.  The problem is that stuff goes in, but blood doesn't come out predictably.  Have no idea how they fix that.

As Beth always says (and means), your prayers  are the bar which permit my occasional chin-ups.  Inexpressible thanks and heartfelt love for all you do for us.

Ever,
Cowboy Bill (for Diamond L'il)

Sunday, September 9, 2012

Sept. 9, 2012: Sunday Update

We're celebrating THREE YEARS of cancer survival since Bill was diagnosed about this date in 2009. He has beaten every odd, all along the way. He has been given "months" to live for so many years that it's funny. And we (okay, my much-loved atheist friends can look away for a second) KNOW that prayer is part of it. (Okay, atheists, come back. And yes, I was reading excerpts from Atheist in Chief Christopher Hitchens' post-mortemly published book Mortality, about chemo and cancer and life and death, and yes, I saw what he said about prayer, and he was entitled to his opinion, but we're all about not disrespecting, 'round this here corral.)

Only news is that tomorrow morning VERY early, the cowboy has to go to Wake (Diamond Lil at the wheel) for a CT scan to see if the current chemo drugs are doing a Chuck Norris on his tumor.

I do not have ANY idea when we will have the results, tho if it were up to me, I'd sit down right there and wait two hours till the radiologist had that thing typed up. But Bill's a different breed; I got a $20 bill says he isn't going to let us wait. He'll say what difference does it make, anyway. And I'll go along with him, cause he's so cute with no hair. (He's got this super adorable baby fuzz coming in where he used to have hair. It's platinum white, and about 1/8th of an inch long, and looks awful cute when the sun hits it. My foxy boy be struttin.)

We will NOT see the Onco at Wake due to Madame Boone Onco Bronco having set the appointment up (a) late; and (b) completely weirdly. I'll skip that. But this causes us to not get the results till possibly Thursday, his next chemo time.

(If you ever go over there, you want Dr. Gray. He and everyone there is/are superb and beyond perfect and on top of his/their game/s. But I'm entitled to my opinion that there is one exception to this superb perfectness. Now, moving along...)

I also do not know what will happen with each possible outcome--I mean, if the tumor is or isn't responding, I don't know what the next move will be. Of course, if the appt had been set on time and correctly, we would have met with our Oncologist at Wake last week for all this, at which time he would have given us the results and discussed all the scenarios and choices, but noooooooooooooooo.

Maybe I'll get my way, and we'll get the radiology report tomorrow by waiting a couple of hours. Either way, YOU KNOW I will post as soon as we know anything, so if you don't hear from me till Thursday night, you will know: (a) I won my $20 bet; (b) I am unimpressed by a certain Madame So-and-so in Boone.

Goodnight, and thank you as always for praying, caring, reading, supporting, loving us! xoxo Beffie and Billy


Monday, September 3, 2012

Sunday Update: Bill is Pretty Darned Okay

Sorry I skipped posting for a while there. I started feeling like all I was doing was whining and upsetting everyone. Ooops! But you have to admit: I've been known to be a drama queen! :)

So just this quick note of update: Bill is doing fine. He had chemo on Friday, even tho he had a fever and some medical issues. We are now waiting for his nadir day to kick in, his lowest day. It should have started tonight, but it didn't, so either it will hit on Monday or Tuesday, or it won't hit at all. We don't know, but we're happy he is feeling decent. Not GOOD, but decent.

Next event: A CT scan at wake to see if this chemo is working, and if they should continue it or try something else or who knows what. No more chemo till he gets that scan. I'll report as soon as we hear a date for that!

Next time I go with Bill to Wake for a scan and any kind of "report" from a Dr., I have to have a special prescription for one whopper of a sedative. The last time I tried it on my own steam, and I almost went crazy with anxiety, feeling panic and tearfulness and terror all day. It was unprecedented. I used to be so brave. I had to call my brother in Morehead City to talk to me, until I could calm down while Bill was in for his CT. It has become almost unbearably upsetting to go there. It used to be interesting. Now it is terrifying. For me. Bill is calmer. Next time, I hope to be half asleep through the whole thing. I am not designed for drama, fear, and terror at THIS level!

Bill's symptoms now: Mainly fatigue, low grade fever, digestive troubles, shaking hands, numb feet, hair loss, and rapid weight loss. Even steroid appetite stimulants that make him eat almost every hour, and a LOT of food, and high calorie food, couldn't stop the weight loss. He lost almost 3 lbs last week, eating at least 8 to 10 meals a day! About 30 pounds in the last few months! But he isn't yellow or white or sick looking, too much. He is ready for his hair to come back, though, curly, thick, blonde and gorgeous. Can you see him with curly hair? It happens a LOT with chemo! His beard is gone, eyelashes, eyebrows, has a little bit of moustache left. Poor ole cowboy! He's still awful cute!

Thank you for caring, and I hope this lets you not worry about him for now. I will always post if a dramatic downturn occurs! But I should follow my Sunday rule and always write on Sundays, just so you know not to worry.

Love and hugs and thanksgiving for your thoughts, prayers, wishes, and good hopes for our boy!

Bethie and BillyBob the Cowboy

Thursday, August 23, 2012

Cowboy's Mystery Fever & Caregiver Whack Attack!

Wow, how to keep this short. Ummmmmmmmmmmm.

First, delete the above sentence. Then delete these two sentences.

Okay, today was scheduled for chemo, but when we got there, things were weird. First, our oncologist has gone in the fashion direction of a POLE DANCER, in that she has suddenly dyed her dark brown hair platinum white (which failed and yielded orange hair), gotten a sexy tattoo on her breast, which IS revealed by her low-cut clothes, AND today she was wearing (I'm not making this up) 5 inch stiletto heels upon shoes that were SEVERELY RUBY RED and FRIGHTENINGLY SHINY and did not match her outfit at all. We are wondering if she's been sniffing the chemo.

But! She agreed with us on all points today, so I actually kind of liked her. The way one likes the aesthetics of, say, a carnival.

She agreed that he did NOT qualify for chemo today. His fever is STILL around 100, even now and after antibiotics, ruling out a bacterial infection (thank God, because the death rate is 20 to 50% for people in his category if they get blood bacteria), BUT he now has a fever of unknown origin. And feels like the dickens. So he got steroids and anti nausea IVs and TWO HOURS' worth of IV water, because his blood pressure is mysteriously low. He was pretty crabby about the water taking 2 hours. He said he could have drunk that same bag of water in 5 minutes and what the heck were they thinking taking 2 hours to give him water?!!!!

My feisty cowboy.

We will be notified of his Wake Forest date for a scan to see if chemo is working, but don't know when. He gets chemo next week for the last time till they scan him.

As for the Caregiver, she had her first Caregiver Mega Nuclear Meltdown on her birthday, Aug. 22. Bill had been so sick for 3 days, with that ever-creeping fever, and caregiver was going without sleep, then spent stressful day at clinic, unable to fix the fever, then that night the caregiver's mother called [....deleted by Beth.] This phone call caused caregiver to have a complete meltdown, and spend all of the next day and a half (caregiver's birthday) in bed, alternating between crying and sleeping the WHOLE DAY in a wild, unmanageable state of complete depression.

So if you sent that caregiver (me!) a birthday message or card, please know that I have waited until I have finally become myself again, to celebrate my birthday, and will soon read and reply to the wonderful messages and cards and even presents!!!!!

Well, that's about it. But I may post SHORT but frequent updates, like every few days, if the drama of the fever and other Cowboy problems don't resolve. Otherwise, I'll put up my almost-regular Sunday report of just general catch-up info.

Thank you thank you thank you for reading all this and caring, worrying, praying, loving, and/or thinking good thoughts for the cowboy. I'm making use of the leftover pieces of good wishes. :)

Love you all sooooooooooooo much!
Bethie the Whining Caregiver and Cowboy Billy the Brave Cancer Fighter

Tuesday, August 21, 2012

Home--Infection Still a Mystery

(this is copied from my facebook page, so you may have already seen it there.)

Home now, with mega-antibiotics and continuing fever. Bacterial cultures take minimum 18 hours to grow, so won't know the cause till then. And if it's a virus, we'll never know. 

At least, NO hospital, which he hates so much he says he would have refused it.

But his fever is going up right now, again, and his blood pressure has dropped dramatically, below the safety zone--they don't know why--and his heart is slightly racing at 100 bpm while he's lying down resting. 

Apart from THAT, Mrs. Lincoln, how was the play? 

Oh, and they don't think he will qualify for chemo on Thurs.

"Wow. This is FUN!" said no one ever, at any time, in any state of sobriety or intoxication.

I'm crawling under my covers and hide now. K. Thnx. Bye.

Cowboy Going to Oncology Evaluation This Morning

After hemming and hawing about hospital or not, after Bill's fever finally reached hospital level, it suddenly went down to the mid 100s, (For you believers, I had just laid my hands on him and prayed and during that minute, his temperature dropped by a whole point, not a tenth of a point! For you atheists whom we love equally, it was just a post hoc ergo propter hoc mirage, but we liked it!) so he decided not to go last night. Yes, we said our thank you prayers!

So last night I called the chemo clinic (which is not 24 hours--open only business hours) and left a message for their UBER-COMPETENT Head Nurse, Paul. He's the best! He called back before they even opened this morning,  at 7:45 a.m. (I had phone by my bed in hopes he would call) and said, "Get him in here!"

What relief I feel, and Bill does, too. He will be seen! Paul suspected that my "google diagnosis" was correct--febrile neutropenia--where all the white blood cells disappear and a fever arises and potentially sepsis aka blood poisoning, and it is very dangerous. My reading says 4 days of antibiotics by IV, until the white cells return, but maybe he can just get drips at the clinic and avoid the drama of a hospital. We're getting ready to go, as soon--as he stops the dry heaves. (It's a laugh a minute over here.)

I'll update. I love you all, and I'm holding your hands, and Bill would be too, if he thought of it.

Monday, August 20, 2012

Monday: Hmmmm.

1. If you are getting a feeling of depression or disturbance from reading this blog, and would like your name taken off the circulation list, don't think you'd be hurting my feelings or Bill's!  See, I recently read an email from a beloved friend, saying her husband's cancer was back and surgery was needed, and I burst into tears and was upset for two days, and still am upset, when I think about it. Only then did I realize the price you might be paying for reading this blog about Bill. Perhaps I should also consider not telling you everything, because it could be really messing with your head. Sorry that I was insensitive to that, before. I have these blind spots (Cliff, I'm still sorry about the booger joke.)

2. Bill felt a little better this morning, but tonight his fever is at an all-time high, still below hospital level, but VERY close. This led to some discussions at midday about graves and funerals that left us BOTH bedridden for the WHOLE rest of the day-- him with his illness, me with depression. He also is battling depression now, and considering getting a scrip for anti-depressants. I already tried that, and was still depressed, and they DOUBLED my dose, and I'm still depressed. But it's a natural kind of depression, very much "part of life" kind of thing, even organic to life, I think. So it's not that bad.

3. Next event: Thursday, he meets the local oncologist, and will get his blood tested. I think he has neutropenia, which is insufficient white blood cells. There's a treatment for that, but it requires pain medicine for about 3 days, at a level of pain-killing that we do not have in the house. He'll need a special Rx for that super-intensive pain med, if he gets that shot. Then he has to decide whether to take the 3rd dose of chemo that day, and 9 more weekly shots after that. At this rate, he's thinking he might stop chemo, at least for a while.

So really, nothing new. But I promised a Monday update. Sorry I broke my new Brevity Rule! Next time, maybe I can do it in 3 sentences again.

Love and gratitude,
B&B

Sunday, August 19, 2012

Three Sentences (Depending on How You Count): More Tomorrow

Bill had a difficult day today, and has been struggling with fever since last night, and hovers within .4 degrees of having to go to the hospital, but manages to stay under the cutoff point.

He has been 99% bedridden this weekend, and I bring him everything he needs (he calls me with bells).

By tomorrow, he should feel much better and be able to walk around in the house a little bit. (THANK YOU for checking in and caring and praying and thinking of him; I'll post better news tomorrow, I'm sure!)

Love you all!

Beffie and BillyBob

Thursday, August 16, 2012

ChemoMarathon! Longest Session Ever!

Today, Bill had the longest session of chemo he's ever had. It went so long that we were the last people out, and they had to stay open till after 6 just for Bill (not his fault) when, normally, they close at 4:30.

He believes they did several kind of stupid things that made the session take twice as long as planned. He was kind of crabby to the nurse! She understood. But he was pretty upset at how long we were there: 1 pm to 6:30-ish. At least he got to sleep through most of it, in a huge barcalounger. ha. I had to sit on a hard chair and WOW WAS I SICK OF MY LAPTOP BY 6:15 PM. Whew! Never wanted to see email or facebook again in my life. haha

More to the point: His blood was goofed up today, so he had to get a giant magnesium drip which took forever, and then his port wouldn't work, so they had to use his veins, then the nurse accidentally smashed his finger in the chair tray, and it was quite the day.

He says he doesn't care if I'm with him there or not, but when I took a 45-minute walk outside, he clapped his hands when I came back and said he was so happy to see me and that he missed me while I was away. hmmm. How to interpret that...

He feels normal right now, from anti-nausea drips and steroid drips, and will feel decent until Sunday, his low day.

Next week, on Thursday, he gets his 3rd round. Then we go to Wake Forest (don't have a date yet) for a CT scan to see if this chemo is working. If not, maybe he quits it then. Or they try radiation or something. Not sure. If it is working, then he continues 12 weeks of this, once a week. I don't know how he is standing it. He looks really like a sick person now, and can hardly walk, except for odd bursts of energy, during which he once even went to the grocery story briefly!

I wont put up a post unless there's something to tell you about. So maybe I'll skip the Sunday post and write on Monday, so I can tell you that he felt bad on Sunday but is all better by Monday, without worrying you on Sunday.

We both continue with massively gigantic gratitude for your going through this with us, and caring, and praying or thinking or wishing or whatever you do. Love is love, and we feel yours. Hope you feel ours for you!

Gnite for now! Kisses and hugs from the Chemo Corral.

Monday, August 13, 2012

Monday's Tiny Post: TODAY WAS BETTER!

Just an anxiety reliever note: Bill felt MUCH better after a rocky start this morning! He is still too exhausted to walk very much, but he even felt good enough to sneak out (against Dr. Beth's orders) to the STORE and bought some stuff! What!?????? Then he had to rest 4 hours, but that's how much better he was! I wanted to share my relief with you, so you wouldn't remain bummed out about yesterday. Thank you for your thoughts, wishes, PRAYERS, love, and for being our friends!
Love and gratitude,
Cowboy Bill and Diamond Lil

Sunday, August 12, 2012

Sunday Aug. 12 Quickie Post

Bill said not to go into it. Not sure why.

But he had SUCH a bad day today, starting at 4:30 a.m., that he said it was the worst day he has ever had since chemo ever began, even before his surgery.

I have never ever seen him this completely sick from chemo. And just when we thought it was going to be a breeze, as we expected Saturday to be the bad day, like it has been for months now, but turns out Sunday is the tar pit.

He said if tomorrow he isn't significantly better, he is canceling chemo.

Not sure what that means, but he said not to talk about it, so I won't. If I could, I'd have a lot to say.

I'm starting to think that whining on this blog is tacky. I know a lot of sick people, and none of them whine on a blog like this.

I better just go to sleep. It was not a day I'd ever want to do again.

Love to you for reading all this junk all the time. And for praying and loving our poor boy.

G'nite.

Thursday, August 9, 2012

Fast Report on First Chemo

Nothing to report! We were there from 11 to 430, due to a malfunction of his port, but they fixed it. They dripped in the two new poisons--Carboplatin and Paxitaxel, aka Taxol--and handed me all the sheets of warnings which were 5 pages of warnings for each drug.

And now we just wait. He's loaded up with anti-nausea and steroids tonight, so tonight was great. He even sat and TALKED TO ME for a whole hour! I never get THAT much time from him! Yayyyyy! I was very happy!

Except that we did end up on the subject of funeral homes (I'm against them; he's for them) and buying burial plots or was the backyard legal (he refuses to be cremated) and did we know anyone who would make a coffin (in his old church you were supposed to be buried in a coffin handmade by a church brother or sister) and where in the world could he be buried where I could visit him every day and, I'm against embalmment and he is for it, and I'm for the old Orthodox practice of reading Psalms over the person the whole night after they perish, and then burying them unembalmed the next day, and he thinks that's crazy altogether, and then we flipped it around to what if I die first, in, say, a car wreck, then what are MY preferences, and wow, see, these are the kinds of conversations you start having at a certain point.

GULP.

But back to the chemo thing: So for 7 days, I record in a notebook his reactions, then thereafter, we know what to expect each day of each week. I'll post as soon as any reaction happens. The night of the reaction, I will post, so if I don't post, it means nothing happened. We don't have the least idea what to expect any more, all new drugs.

See? I had nuthin to say! Thank you for every thought, every beam of love, every prayer, every hope on his behalf. We love you like kwayzeeeeee.

Sunday, August 5, 2012

Sunday Night. New Chemo Starts This Week

Sorry I forgot to write more after the last blog. This week has been difficult for Bill emotionally, and for me at least as much. There are so many things I could say, but not on a blog. There are more facts than I can share on the blog, too, so there are things you just don't know or can't know or something. It's becoming difficult to really tell the story any more.

How to Blog for a Stage 4 Cancer Patient 101: I missed that class.

In summary, we had an apptment with the Boone Oncologist this week. She was VERY nice this time, but while trying to be nice, she accidentally upset us both. We mentioned that Bill had a bucket list. She asked what it was. He said, visit Vermont, visit Wisconsin, see the Pacific.

Well for the rest of the visit all she could do was say over and over and over how he should do that now, he should delay chemo, he should NOT wait till November, he should NOT wait till the next 12 weeks of chemo are over, he should go, go NOW, GET PLANE TICKETS TODAY, it gets COLD in Vermont, the Pacific ocean gets COLD (she's actually saying all this). Yep, I sure would go NOW. I sure wouldn't wait. I sure would buy those tickets TODAY. And so on.

When we got out, I said, "Bill, did you get the same impression I did from the doctor's  'Don't delay that bucket list!' speech?"

"Yes, unfortunately, the message came across loud and clear."

I said, "Are you sure you don't wanna buy some plane tickets today and put off this chemo?" He said that he feels so ill that even if he waited a month to start the new program (no more red devil, at least), he just feels too ill to travel, so his idea is to finish the 12 weeks and recover from that, and THEN do the bucket list.

Changing the subject: the new chemo is carboplatin and taxol once a week. The two drugs are so often paired that they are called something like Carbo-Tax. Sounds like something Congress might come up with to fix the budget.

Anyway, he doesn't qualify for a full dose, so his reactions should be much better, she said. It does all the same side effects: hair, nausea, platelet disorders, immune compromise, etc. and Carboplatin dramatically increases your chance of getting leukemia in 20 years. Oh! Great!

But both drugs have been approved for bladder cancer, even tho there is no study showing that they have any effect on bladder cancer. It's just a pot shot, but Bill's been Mister Invincible so far.

He said, "I'll show everyone. I'll be the statistic that lands outside the regular statistics."

That's the fighter attitude that I think he should have, and will help his immune system, they say.

The hardest part of this week was that he finished writing his obituary and sent it to me by email. He even included a photo so I wouldn't have to dig one up.

If you haven't experienced reading your spouse's obituary, let me tell you, it hits a place in your gut that doesn't really get hit any other way. Ow.

And it leaves you with such an in-your-face reminder that this is a great man, who has lived a great life, a heroic life, a moral life, a hard-working life, a holy life, a life of kindness, generosity, charity, prayer, peace, and love, pulling himself up from some tough beginnings all the way to laurels of greatness being placed on his head by colleagues and even by the world.

And the fact that some little bunch of rogue cells has the power to knock out a life as great as my cowboy's just seems like science fiction to me.

Back in the days when we never thought one of us would show the other his or her obituary, we used to read the obits, and they always say "after a courageous battle against cancer." And we used to say that if one of us got cancer, we'd want the obit to say, "after a cowardly battle against cancer" just as a joke for how they ALWAYS say "a courageous battle."

I asked him why he didn't put in the joke. But I already knew. It doesn't seem funny now. At least, he didn't put in "courageous battle with cancer." He put "extended battle with cancer."

And to me, that's a victory. Extended means he's made it a long time! He is still with us, and there is still hope, and he has beaten so many odds to still be here, that it's truly astonishing. And he can beat some more odds, too.

Anyway, there's your obituary humor for the day, if that's not a self-imploding oxymoron.

I'll post again Thursday evening, after his first chemo. Thank you for loving us through this crazy mess, and praying us through, most of all.


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.]

THANK YOU FOR EVERY TINY THOUGHT AND PRAYER. YOU ARE IN OUR HEARTS CONSTANTLY.

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.

GULP!

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).

OR!

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.

BUT!

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.

REACTIONS:
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 then....no 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!

Hallelujah!!!!!!!!!!!!!!!!!!!!!!!

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!"

HE DOES NOT WANT TO DIE. <----Look. HE WANTS TO LIVE!

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.

Love,
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.

Bethie

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.


Wednesday, June 27, 2012

Cowboy Wompin Up on the Red Devil

That Red Devil tried to get the best of my cowboy, but my cowboy ain't fazed. Red Devil is nothin' more than a "burp" in the road to Cowboy Billy!
(Thanks to Clifford for this photo.)

Actually, Bill had a few really awful days in this round, but after he hits bottom, he starts back up again, and we're two days into improvement right now.

He had his blood test today, and while he showed some borderline-low scores, he still wasn't bad enough to need an IV booster. They also said he can come in any time he gets that 24-hour nausea, and get IV drips to knock that back, and maybe a low dose of steroids to cheer him on.

So we look forward to a very decent week upcoming. His next event is July 5th, when he gets the last dose of Red Devil before they do the MRI in Wake Forest soon thereafter, to see if the Doxyrubicin has worked on the tumor.

Gratuitous and Irrelevant Lesson on the Dangers of Gyms

I had a tiny drama with a bacterial eye infection this week, but today I got antibiotic drops, so that's that. It was in the same eye that 2 weeks ago was diagnosed with macular wrinkles and retinal membrane (no treatment needed), and the day after THAT exam was when tears started coming out of that same eye ceaselessly. The eye got gradually grosser. The Ophthalmologist admitted that the dilation drops could have been contaminated, or the equipment improperly disinfected, since I caught it the day after being there. Oops. But it could also have come from my daily gym trips. 

Did you know that gyms are, per square inch, the germiest places on earth? And gyms account for a huge percentage of eye infections. You touch a piece of equipment that someone forgot to sanitize, you push your hair back or wipe the sweat off your forehead, a drop of sweat rolls down into your eye, and voila! Eye infection! Even gloves are no help. The only solution, the Dr. said, is to carry your own personal tube of hand sanitizer cream, and use it before and after EVERY SINGLE surface you touch! What a pain! But, okay. Eye infections are gross. No pinkeye for bacterial infections (only for viral), but when you wake up, your eye is glued shut and you look like something that crawled out of Stephen King's Pet Cemetary.

On that picturesque note, I conclude today's news! I probably won't write again till Sunday, as nothing should happen by then, but I'll just let you know.

Thank you always and always!
Love,
Us



Sunday, June 24, 2012

Heading Toward His Nadir, Po' Crittuh (But Miraculous Photos!)

I would have written sooner, but I kind of feel bad when I put up bad news, because it seems to upset people, then I feel guilty, and Bill kind of says, "Well maybe you should've played that down."

So I don't know what to do! I guess I'll just keep telling the truth, and if you get upset, then go have a nice hot toddy. hahaha.

Bill was fantastic on Wednesday after the shot, due to steroids and helpful IVs. Thursday, pretty great. Friday, crash 'n burn. Saturday, so sick I couldn't leave him. Sunday (today), markedly better than Saturday.

Though it's a calculus, when I say "better." Because some things are better, but some are worse.

Mainly, fever, bleeding, pain, nausea, ((((dry heaves as early as 4 am))))), red burning skin, extreme fatigue, irritability, sadness, moments of hopelessness, hair gone, and NOW throw in a new anxiety: an MRI to see if the Red Devil did anything to the tumor, or if the tumor is just continuing to grow. That's coming up and seems like it will be a HUGE turning point in his life. No date yet. May not happen until July. But! His mouth sores didn't strike this time! Prayers answered! What a huge break that was. And then, getting some days of feeling good, like a vacation from all the suffering. Huge, unexpected blessing.

Next event is just a blood test this week, and an IV drip if his blood test is bad. The following week will be the last Red Devil before the MRI to check on whether the tumor is shrinking. I'll post as things occur.

NOW FOR SOME GOOD NEWS! A STORY OF LOVE IN PHOTOS!

A friend of mine from high school, with whom I interact daily on Facebook (Clifford), went to Univ. of Fla. as did Bill. To these guys, apparently a Gator Brotherhood is a higher status than even blood brotherhood. Because Clifford has taken on an indescribable weight of compassion for Bill, even tho they've NEVER MET! Cliff has sent Bill flowers in Gator colors, sent me a card and encouraging messages, sent Bill a huge package containing Bill's new favorite tee shirt, a Gator Nation shirt, AND a really, really nice Gator Jacket, big, and padded and warm and beautiful! Bill is more in awe every time Clifford surprises his "Gator Brother" with something.

Well.

The biggest surprise of all came yesterday, when Clifford posted on Facebook, the words: "Solidarity with Bill" and then posted these photos, in this order, to our complete shock and surprise:

First photo: Cliff writes, "Today's shirt" to show Gator solidarity with Bill.


Below: Cliff writes, "Front before Bill." That's Cliff's head.

Below: Cliff writes, "Back before Bill." Cliff's head.

Below: Cliff writes, "Front after Bill."

Below: Cliff writes, "Back after Bill."

If there's any uncertainty about what just happened, it's this: Clifford, who has never even met Bill, just reads this blog and knows Bill through Facebook and through me, SHAVED HIS HEAD in solidarity with Bill! 

I will spare you my reaction which started with shock, followed by awe, followed by tears, followed by 8 thousand posts to Clifford, in essence naming him winner of Greatest Guy in the World contest for the 21st century.

I will end this blog here. Words fail me. Words fail to convey the impact and power of THIS kind of love. Clifford, you changed all of our lives. With LOVE.

"Greater love hath no man than this: that he would lay down his (hair) for a friend."

Speechless and tearing up again,
Beffie and the Bald but not Bald-Alone Cowboy
God Bless Clifford.
And all of you for loving Bill in your own ways. We are changed by your love. THANK you.





Wednesday, June 20, 2012

A FABULOUS, MARVELOUS DAY! WITH PHOTOS!

First, we have PITCHAS! OF THE COWBOY! AT THE CHEMO CLINIC!

Here he is (below) waiting for it to start, waving at the camera. Please notice and appreciate his new shoes: New Balance tennis shoes. He loves them. He is reading a new PG Wodehouse book (Uncle Fred in the Springtime) that our beloved Anna Barry recommended.



BELOW, you can see the nurse giving him the Red Devil. She's in her sort of haz-mat suit giving him the bright red drug in two fat syringes. Each syringe takes a half hour to inject, via his under-skin port, into his neck artery. Ew! She wears a body suit and rubber gloves, because if it hits skin, it burns a hole all the way down. Ew, again!

He is a mighty relaxed cowboy! Isn't he sumpn? Who wouldn't love him? You can see my perpetually messy hair accidentally got into the picture (on the left).

Anyway, Bill says that RIGHT NOW, he feels as good as he did as a young man, like he could ride his bike 100 miles, or golf 18, or do ANYTHING!

Why? It's the steroids! Tons of steroids! And HUGE fat intravenous bags full of anti-nausea medicine and feel-good preparations to get him ready for the Red Devil bomber, and to get him past the first couple of days.

REALLY. This feeling-great thing didn't happen the last times he got it! And I was afraid they wouldn't even give him chemo today, with how terrible he felt. He was SO beaten down yesterday and this morning, that he said his brain wasn't even working right. He said he just felt poisoned, foggy headed, depressed, nauseated 24 hours a day, and a bunch of stuff I can't write on a blog, but all bad.

Then this! We don't know how long he will feel great, but great he feels!

I'll post more frequently for the next week, as that is when the most dramatic things happen.

(Remember, if you'd rather get this blog within 1 minute of my writing it, in your email inbox, just send your email address. Then you don't have to keep checking the blog to see if it's up.)

Thank you for your prayers and love and thoughts and wishes and everythings. It's working! We are both soooooooooo grateful. THANK YOU for loving us!

We love you more! :)

Diamond Lil and Cowboy Bill

Sunday, June 17, 2012

We've Seen Better Days

I haven't posted every day, because I didn't think there was enough info to keep you awake.

But since it's Sunday, and Father's Day, here's an update:

Our heroic cowboy is being brave, but problems are getting to him.

1. Most of his hair is gone, along with half the volume of his beard, moustache, and eyebrows. He's scared to tug on his eyelashes. I tugged on his arm hair, and out came a clump of arm hair, so no more doing that. It's surprisingly traumatic, even for him, for hair to fall out. More than vanity. Just stinkin' weird!

2. He is sleeping a LOT. Very fatigued.

3. He is kind of yellow or yellowish-white. When he looks at himself in the mirror, he gets hungry for egg salad. Take it from there.

4. Upchucking in the mornings--automatic style. Involuntary. Not cool. Carries bucket. This morning, he was so miserable from the involuntary contractions of his abdomen that he was telling Jesus to come get him.

5. When this all comes together, he feels depressed, as you can imagine.

6. Has some serious new bleeding, a lot, and that is scaring us both. He doesn't really want to investigate it. His logic (which is almost solid): "I already have cancer. I don't want to know if I have more. All they can do is chemo, and they're already doing it. I refuse further surgery. And I have every right to say no to their offers of tests and procedures." He's right. Tough choices.

7. In just 3 days, Wednesday, he gets another WHOLE DOSE of the red devil plus Gemzar. In the condition he is in, I can't imagine how he's going to stand it. I will be beside him throughout all of it.

8. But for happy news, he had a great Father's Day, and is stretched out on the sofa watching his beloved golf. And he's hungry tonight, so I made him spaghetti, one of his favorites. See? It's not all bad!

Thank you for caring, praying, following--thank you always. Your love is rowing his boat, and he's hanging in there!

THANK YOU!

So much love.

Bethie and Cowboy Bill

Wednesday, June 13, 2012

Yay! Drama! My Favorite Thing! But Thank God, It Wasn't Bill This Time...

Today, we had a big drama. As you know, I am the drama queen of the family, and I love dramatic scary moments in real life. But this one happened to ME, and it wasn't quite as much fun going THRU the drama, as it was coming out safely at the end of it.

But first Bill!

He had his blood test and is doing so well, he did not even need the chemo drip they had him scheduled for! He is appearing indestructible to the "red devil."

And yes, his hair continues to gain its independence, but there's still some on his head!

He feels great, is only a little tired, and is eating in restaurants! It's just unbelievable! (((((((((((((prayer?)))))))))))))))).

Here ends today's report on Bill, the actual cancer/chemo patient and subject of this entire blog.

However.

The rest of the blog is about me, attempting to take over the blog, upstage Bill, and get ALL YOUR ATTENTION FOR MYSELF! So if that seems tasteless, crude, discourteous, graceless, inconsiderate, self-serving, intrusive and vulgar, then skip the next part.

Cause it's all about MEEEEEEEEEEEEEEE!

For a little while today, my inner panic button got pushed, and during that time, I was pretty darned sure that by the end of the day, I would be blind, de-eyed, glass-eyed, and possibly diagnosed as being filled with multiple cancers that had metastasized to my eye, and/or having brain-eating parasites that had started by digesting the back of my right eye.

An emergency trip to the World's Coolest Rock Star of an Ophthalmologist in Boone, saved me from these wretched illusions.

Since I already wrote the report of My Eye Apocalypse on Facebook, I'll just copy/paste that in here, for anyone who is forgiving enough to allow me to UPSTAGE my poor husband on his own blog, by my self-centered, shameless hunger for sympathy and attention. Here's the report as posted on Facebook.


Drama Queen Eye Hysteria Zombie Apocalypse Report: 

We were going to go do a chemo thing for Bill when I called the ophthalmologist (try spelling THAT word!), and as I described some new eye symptoms in one eye, the woman stopped me and said, STOP TALKING!! EMERGENCY!!! COME IN! COULD MEAN EMERGENCY SURGERY! 

Well to a drama queen, such as myself, she might as well have screamed ZOMBIE APOCALYPSE! MAYANS WERE RIGHT! SURROUND YOUR HOUSE WITH TREADMILLS IF YOU WANT TO SURVIVE THE ZOMBIES!

My whole body went into shock, panic, weeks to live, glass eyes, blindness, respect for Helen Keller, theological questions like "Is God mad at me?". 

Even a valium wouldn't touch it. 

So we did the chemo trip, and THANK GOD Bill didnt need a drip. 

So we rushed to eye clinic, and this AWESOME GODLIKE 7 FOOT TALL REINCARNATED APOLLO of an eye dr came in and did this intense exam with dilated pupils (still dilated, I feel CRAZY with the pupils dilated!!!!!). 

Result: words I can't spell. Macular pucker something, with a retinal membrane something, and it probably won't ever need surgery, but if it does, I'd have to lie FACE DOWN on a bed for 14 days WITH A GAS BUBBLE IMPLANTED IN MY EYE TO RE-ATTACH THE RETINA! omg! 

During the exam, I started laughing about something, and then the Dr started laughing at what I was saying, then the nurse started laughing, then we were all laughing, and then the Dr said to Bill, who was there, "Does she talk this much all the time? My sympathies, man!" and gave Bill a fist bump!

Bill said (total straight face), "Two weeks upside-down without talking? Are you SURE she doesn't qualify for that?" 

We kept laughing so much that the Dr said, 'You are my favorite patient of the day," and when I was paying my bill, he came over and put his arm around me and said to the nurse, "She is my hero. Funniest patient ever." 

I asked the nurse, "Was there a mood elevator in those eye drops?" She said, "No, and I've never seen so much laughing in an eye exam in my life." 

I said, "Well, I thought I'd walk out of here with a glass eye. I guess I'm just so relieved." 

So I have 20/25 vision and NO eye disease except this THING that won't progress, most likely. 

Gawd. I went from almost throwing up with terror and weeping (Bill had to drive during that part), to laughing and wanting to kiss everyone I saw (Bill had to drive home during my euphoric episode, which euphoria was fully expressed all the way home, even though my eyes were closed, due to the bright sunlight and my dilated pupils). 

I don't know why he is now taking a huge nap. 

Poor Bill. He just said, "You're a piece of work, Beth, a piece of work."

I wear that cowboy out, sometimes. I really think I do.

Love to all.

Tuesday, June 12, 2012

He's Feeling Purty Good!

No news! Bill is feeling purty good, all things considered.

His hair is still on his head, falling out only slowly, like autumn leaves, a few strands drifting down at a time onto his shirt, or pillow.

But if he plucks a handful, he GETS a handful.

I was thinking of rubbing superglue all over his head to keep it on there.

His mouth sores are starting to return, and he has intermittent nausea, but is able to go out a little bit, and even drive. Occasionally, he turns all white, and then he knows to go to bed and rest or sleep.

Otherwise, his skin color usually looks like he just got back from a cruise in the Aegean Sea. Seems like the bright pink turned into a tan. That's weird!

Tomorrow he goes in and gets his blood tested, and maybe a two-hour drip of magnesium if he needs it. Otherwise, nothing scheduled till next week, when he goes in for the next round.

Love to all and thank you for caring!




Sunday, June 10, 2012

Hair Today, Gone Tomorrow

Big moment in the Cowboy's chemo history.

FINALLY, his cowboy hair met its match.

And it's raining hair, beards, and moustaches at our house today.

Bill was sitting on the couch watching golf, and suddenly he yells, "Beth! I just pulled out a whole handful of hair!"

I ran in. "What? Show me! What do you mean?"

So he reaches up to his head and gently pulls on his hair, and out comes a huge clump of it.

Oh, wow.

Do you, reading this, feel that in the subconscious, archetypal, reptilian, dream sequence part of your consciousness?

Cause I sure do. And so does Bill.

Wow.

It never sounded that weird before. Hair falling out. Chemo, yeah, yeah, yeah, tell me something I DON'T know.

But the first time you run your hand through your hair and that hair decides to take a vacation from your head, and shows up, by surprise, in a big ole clump between your fingers, you're thinking, "Dear Life As We've Known It Up Till Now:  You got some splainin to do."

Oh, wow. (Sorry to repeat myself, but oh, wow.)

So, not knowing what else to do, having skipped the class "Hair Coming Out in Clumps 101," I said, "Try your moustache."

Boom. Moustache clump attains freedom from face.

"Try your beard."

Beard clump: free at last.

Oh, wow.

So thinking I'm helping, I run and get him a big garbage can, a comb, and a mirror. He says, "Um, what is THAT?"

I said, "Well, in case you want to get it over with and just pull everything out."

(Later, during my knee-jerk inner-child panic phone call to my mom, the wild-minded atheist, she says, of the mirror, garbage can, comb idea: "WELL WHAT IN THE HELL DID YOU DO *THAT* FOR?" Thanks, Mom.)

So Bill politely thanks-but-no-thanks me, and returns said items to their original positions.

I said, "Bill, not that I'm upset by this but, I'm feeling, um..um..."

He says, "Horror?"

"Yeah."

He says, "Me, too. Let's not talk about this any more and tomorrow, I'll go get everything shaved off. What's for dinner?"

"Sloppy Joes."

"Good."

"And, Bill?"

"Yeah?"

"It COULD grow back curly and red. We could have fun with that."

Bill: "Sloppy Joes and what else?"

Sooooooo.

Apart from the hair trauma, he was sick all day, gagging, aching, fever, weak, unable to get off couch by himself sometimes. But we know that starting tomorrow, he begins his ascension to feeling almost human till the next dose.

Thank God for that!

And tonight, just for a minute, remember to be grateful for your hair.


Friday, June 8, 2012

(Sound of airplane in tailspin) then....BAM!

Bill Drennan is one hurtin' cowpoke today.


Tomorrow's another day.

Love, Bethie

Thursday, June 7, 2012

Day After 2nd Red Devil: A-OK!

Our Man of Steel, BillyBob Drennan, is following, so far, the identical path he followed during the first 14 days after Red Devil/Gemzar chemo #1.

That means that today, day 1 after chemo #2, he is filled with energy, from steroids, and has a great appetite and refused to stay home and rest, despite my pleas. He made a to-do list for us with 11 things on it, and we did them all!

His only symptom is that his skin is bright red. According to our journal, tonight he will get a fever, but if he takes his nausea meds every 6 hours, including setting his alarm through the night, we hope he won't be upchucking in the red bucket tomorrow, like he was last time, on Day 3, from not taking his meds through the night.

Tomorrow, the journal says he will begin to feel quite ill, in several ways, and will start running a fever.

But by the 2nd week, he should start to recover.

Will this pattern hold, even though chemo has a cumulative effect? We don't know. We know he won't be BETTER than he was in round 1, but we hope he isn't any worse. (PS: He hasn't lost any hair at all, and should have lost it all by now. Ain't he sumpn?)

(By the way, those scary BUN/Creatinine scores were re-checked, and his body had pulled out of it. He came out of the danger zone and is in the normal range again on that. Whew!)

The Onco Bronco said that after the 4th round, he will go to Wake Forest and get another MRI identical to the one that found this new tumor by his heart, so they can see if this chemo is shrinking that inoperable tumor. If the tumor has responded well, he'll get another round of red devil, then 5 more rounds of totally different drugs as a followup (ten MORE weeks of chemo, after the 10 red devil weeks). If the tumor isn't responding to the red devil, he won't get any more red devil, and they'll probably switch chemo drugs, to find one that works.

I'll be posting! THANK YOU for caring and loving and praying and hoping on his behalf.

"The Lord is my shepherd; I shall not want." -- Ps. 23

Wednesday, June 6, 2012

Chemo Round 2 All Done!

We are home now, and Bill is finished with round 2 of his chemo!

He got "red devil" again (hasn't lost any hair yet) and Gemzar, along with steroids, and bags and bags of anti-nausea medicines.

The whole thing was kind of quick, and included free lunches brought to us right in our chairs!

Only freaky effect so far is that when Bill walked into the clinic, he looked like a robust, well-fed, regular guy who might easily have just come off the golf course.

But before he even got out of his chair at the end of the "poisoning session," he looked like he'd just spent the day with Dracula. He was completely drained of all normal color and had turned yellow with a tinge of green and gray (green and gray were my high school colors; they look good on a cheerleader but not on Bill's face.) The nurses didn't think he looked like he could even walk to the car. It was strange!

So now he is trashed out tired, but zippy from the steroids, and we have a better idea what to expect each day, because I kept the 14-day detailed side effects journal for him.

Our carpet beetle apocalypse ends tomorrow with the final round of pesticide in one room, door closed, and exhaust fan blowing out all the pesticide. In 3 days, it's all dried out and gone.

I'll post at the next juncture of fun!

Love and gratefulness,
Bethie and the Cowboy