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,

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.


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.


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.