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.

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,