Spent about 8 hours at the hospital today getting transfusions.  Bob did great.  Got home about 6:30 pm, and about 9 pm he complained of being cold.  Took his temp- 99.5

We have to call the on-call doc for a  temp of 100.5 or greater.  Because Bob has no white blood cells….he’s not so good at fighting infections.  A fever could mean trouble.

By 10 pm Bob’s temp was 100.9; we called and the doctor sent home health agency out.  The nurse drew Blood cultures and then started IV antibiotics.  I will be giving these IV drugs at home, every 8 hours.  Bob doesn’t feel bad….but does look flushed and feels warm.  I’m not scared, just feel a little lonely.   I wish my mom was here.

Aimie, Katie, Stan and Chuck are all praying.  (Chuck is Aimie’s swim coach from years ago.  He’s a good man.  Stays in contact with us, prays for us….great guy.)

 Going to bed now, praying that we have a peaceful night with no more fevers.  Will see doctor in the morning.   This will not be like last time.  Bob will be fine.  Did I say I wasn’t scared?  OK, maybe a tiny bit scared.  God help me to have bigger faith….faith that chases away all fear.

Today I woke singing “Whats up?” by Four Non Blondes.  So what IS up with the flashback of songs?  ?

And so I cry sometimes when I’m lying in bed—Just to get it all out, what’s in my head.  I am feeling, a little peculiar.  And I say hey, hey…hey, hey. Hey, hey, hey what’s going on….

Hmmmmm…… Bob woke up with a mouth full of dried blood.  His platelets are low (platelets help your blood to clot) and since his are low he has a propensity to bleed.  He must have bitten his lip while sleeping.   No active bleeding so we weren’t too worried.  He’s got a few blood blisters in his mouth, we’ll just let the clinic know when we get there.

Got to clinic; WBC still zero.  Hgb/Hct 8 & 24.  Plt 7.  We will be going to the hospital after he gets his liter of fluids for a full day of blood and platelet transfusions.  As suspected. The nurse practitioner saw him today, she’s concerned about his kidneys.  Cr has been creeping up every day.  1.8 today.  So they want us to make an appointment with his nephrologist.  We’re not worried.  I remember 8 years ago when the doctors told us that he’d be on dialysis for the rest of his life.  Nope.

So I sit here in the Infusion Center on the 3rd floor of PSL hospital.  Weird place to be.  We are right down the hall from the room where Bob crashed 8 years ago. I walked past the room, and into the waiting room where Cindy and Stan sat….yuck.  Yuck.  What makes me want to walk into that waiting room?  I want to walk in and say, “See!  We’re fine!  Remember us?  We beat you before, we’ll beat you again!” Irrational?  Or not….it feels like the perfectly normal and RIGHT thing to do. Our brains are funny.  Memories are funny.  Not all ha-ha funny, some are just strange funny.   I’m not afraid anymore.  Fear is behind me….not looking back.  Bob and mom will walk through —- and out of this.

Back to my song…and I pray, oh my God do I pray….

Today I woke up singing, ” the lunatic… is in my head…” Not that I don’t appreciate a little Pink Floyd once in awhile; but not exactly the song I’d like to wake up singing.   Bad sign?  The good news is that Bob woke up early and turned on some praise and worship music…and just laid on the couch and hummed along.  He’s singing praise and worship songs….I’m singing Brain Damage.  Hmmmmmmm……

Had to be at clinic at 745 this morning.  Getting fluids again.  His Creatinine is creeping up – 1.7 yesterday.  And his WBC – HGB – HCT – PLT are dropping like a rock.  ZERO white blood cells today.  Platelets in the danger zone at 16.  H&H down to transfusion level at 8.8 & 25.  Tomorrow will be a long day at the hospital getting blood and platelet transfusions.

His major complaints are fatigue and a hunger that cannot be fed.  (he wants to eat but pukes every time he tries). We can deal with both.

Mom saw her doc today too.  Her counts look great.  I asked her what the doctor said, “Same old crap! We have more blood drawn later this week and start another round of this crap week after next.”  Her major complaint is fatigue too.  Fatigue from the chemo and just so sick and tired of being sick and tired.  But she’s able to eat…thank God.  She BBQd pork steaks yesterday and brought me one. Love her.

Bob is still on his good drugs – still ‘Fun Bobby’.  On the way here today we drive by the same lotto billboard we drive by every day.  Fun Bobby says again, as he does every day, “I sure would love to win the lottery”.  I finally ask, “do you buy lottery tickets?” he replies, “Nope, never have.”   You have to play to win, Bob…you have to play to win.

 

All-in-all both patients are doing great.  Thank you God.

Had to be at the clinic at 8:00 this morning…which felt like 7:00 due to the time change.  No worries though, because all we have to do today is rest.

The guy in the cubicle next to us has been puking since he arrived, poor guy.  Sounds awful.  Bob has been snoring since we arrived.  I have him so doped up on anti-nausea drugs I practically have to drag him from the car to the clinic.  Would rather he sleep than puke.

He’s funny on drugs.  I feel like his designated driver.   The entire drive here he tries to tell me where to go, when to turn, how to stop, avoid that pothole, watch out for this guy coming up behind you…the drugged back seat driver.  Then he talks about our girls, “I really love them you know, they’re so good.  They’re soooo good.  I think they’re happy too.  They should be happy…..hey!  Look at how tall that building is!  I bet I could do a high fall from that height.  I wonder how high an air bag could catch me from?  I’m gonna do more stunts when this cancer is gone and I feel better.  And I’m going fishing too.  Where should we go?  Let’s make it a big family trip!”

Most of what he says I just sort of laugh at.  Sounds like the ramblings of a drunk  man.  But the “let’s take a big family trip”, I’m going to take seriously and I’m going to start planning.

Life is for the living.  We need to remember to live.  We have been so blessed, God really has been so very good to our family.  We need to celebrate life!

Okay, home now.  Had my coffee and actually did a little online shopping.  Thank you Amazon.  And I apologize to those of you who have very busy, fulfilled stay-at-home lives.  I meant no disrespect, just venting.  I’m certain you don’t have the trapped feeling.

Bob’s counts are DOWN.   I keep hearing in my head (no I’m not hearing voices)! Just keep thinking to myself….okay, let the games begin!  This is what we’ve “trained” for.  The classes, the prep, the medical team explaining over and over that this is the danger zone!  The week to ten days of waiting on engraftment. How to you get trained to not freak out?  To not let yourself think, even for a second, oh no!  This is when he got sick last time!

I’m reading my bible.  Praying.  Believing.  Mentally training myself to get through it.  We will get through it.

Yikes!  Chill Kim, chill.

Let me start with a warning:  I’M VENTING THIS MORNING.  Sort of telling in the title of this post, Yeah you call it day +5 but we’ve been doing this for nine days now.  Who am I kidding?  More like nine years now !!!!

Nine  days?  That’s it?  Okay so this morning I wake up and Bob tells me that he woke at 1:30 in the morning and had uncontrollable diarrhea, almost made it to the toilet but not quite.  “Don’t worry I cleaned it up though.”. Very sweet of him…BUT HIS WHITE COUNT  IS DOWN and he shouldn’t really be playing in poop.  That’s my job.  Venting.

Then I give him his anti-nausea drugs and wait the half hour to fix him breakfast.  Wait so they can take effect and he can hold breakfast down.  I shower  and get ready for our trip to the hospital, fix Bob some toast which he throws up as soon as he finishes.  Then I try to decide if I should give him the rest of his drugs and risk him vomiting those up…or wait.  Can’t wait too long must leave to get to clinic in time, 8:00 am schedule this morning.  I give him one more anti-nausea drug and wait the last ten minutes (that I had saved for a quick drive through to get my coffee) and then dose him up with the anti-virals, anti-fungals, anti-biotics, blood pressure pills, synthroid……and pray he doesn’t vomit them all over my car.   Venting.

Bob holds the pills down, we get to the hospital, into the ICU area that they’ve converted into their weekend clinic….and wait 50 minutes for someone to come in and draw blood and start his IV fluids.  Probably would’ve waited longer if I hadn’t gone out to flag down one of the nurses and ‘gently’ remind them that we were there.  (I could have stopped for my coffee!)

While I’m on my rant here….I’d like to also state that I don’t know how people stay at home all day without a job.  I realize that I may get some blow-back on this one.  Bring it on….I’m venting.  But seriously, my house cannot get cleaner, my waistline can’t afford another home baked cake or pie, Facebook ain’t that interesting, the TV doesn’t have enough to offer, I’m not one to get into craft projects, can’t read ALL day…..I feel trapped.  I realize that some of this may come from the fact that I went from … instead of zero to sixty, sixty to zero.  I didn’t ease into this.  I went from working every day to NOT.  Not that what we’re doing isn’t crazy important — it is.  But the GOOD news is that it’s a bit boring, and regardless of how good boring is for Bob right now… I don’t do bored very well. 

So that’s my morning so far and it’s only 9:30 .  Hold on….I smell coffee!  

Okay, some kind soul found an old coffe pot here in the ICU  and made coffee.  I now have my styrofoam cup full and feel like things may be looking up.  

More later…..after coffee.  

Bob is very tired today.  At the clinic getting an IV infusion of normal saline with a little bit of magnesium.   We saw his doctor today (everyday we see A doc, today it happened to be HIS doc), which is nice.  Sort of feel like he’s part of the family we’ve known him for so long.  He said, “Bob you’re doing great!  Now comes the fun week, hunker down.  This weekend you may start to see your white blood cells disappear and you may need blood or platelet transfusions.  But you are doing very well.”

That’s the good news.  The bad news — my moms lint lizard isn’t working.  She called this morning, “yesterday was such a good day…and today is gonna suck!  My lint lizard isn’t what I thought it was!”

So if the definition of today sucking for mom is a malfunctioning lint lizard…I’ll take it.

Today is Jordan’s birthday.  Every once in awhile something happens that makes me stop and think about the world outside of “cancerville” (as Rusty calls it).  Jordan’s birthday did it.  Made me a little sad.  We should be celebrating with him, taking the kids out to dinner for a special birthday meal.  But it’s okay.  There will be more birthdays.  And Rusty and Kim are going on a cruise…I want a vacation!

Life just keeps going on around us.  I’m ready to join life again.   Mom and Bob will be better and we will go on a vacation, and we will celebrate again.  For now,  we’ll hunker down.

 

Today was another good day.  We didn’t have to be at the clinic until 10:15 so we slept in a bit.  When we arrived at the clinic we were told that Bob’s blood tests looked good, he didn’t need any IV fluids, electrolytes, or blood products.  So we were out of there in about 30 minutes.

We were told that he’d probably need blood and platelet transfusions by early next week…so Bob figured he had a short window of time to get some shopping done.  We went to visit my mom….she and Bob decided they wanted to go to Bed, Bath & Beyond for a few “as seen on TV” products.

The anti-nausea drugs that Bob is on make him want to shop. ?? I have no idea why.  It was like this last time too.  After he was discharged from the hospital last transplant, my mom would sit with him during the day while I worked.   They watched infomercials and purchased (I was told) much needed items.  Last time this happened I threatened to take his credit cards away from him.  Since the shopping today required them to actually walk through the store, the ‘much needed’ items were limited to a Lint Lizard for mom and a Shed Pal pet hair vacuum for Bob.  They were both thrilled with their purchases.

“It’s been a great day!” mom said, “First I was able to take a soaky bath without hurting and now a Lint Lizard!”   Bob agreed, “Yeah Barb, it was a good shopping trip.”

It’s the little things.  We must remember to look for the good in every day….even if  the good things are Lint Lizards and Shed Pals.

 

 

 

Woke up  at 530 this morning to the sound of Bob vomiting.   Exactly as they said it would happen.  Dr. M told us that by the end of this week he will have the nausea, vomiting, hair loss and diarrhea.  He’s tried very hard to fight the mouth sores by rinsing his mouth out with a baking soda  and water solution.

It is all expected but that doesn’t mean it’s easy to accept.  I don’t think I’m scared anymore -thank you God!  There are brief moments of uneasiness that may be the beginnings of fear…but I’m praying it away as quickly as it comes.   Last night Bob’s parents visited and his mom was asking some questions about cancer and it’s causes and treatments … And the fact that doctors don’t have a cure yet….blah blah blah.    Does that stem from fear too?  The questions?  And the reliance on the doctors to cure him — even though they’ve said repeatedly that there is no cure,  just a chance at remission.  Fear sucks.  Even when I just see it on someone else.

But my hope, my faith, my trust is not in a drug or a doctor.  My faith is in God and His holy word.  I will continue to look to Him for the answers, because he’s got them.

My dear friend Cindy Hope used to say, “No matter how grey it looks, there is always a patch of blue.  So look up and see the patch of blue.”  This morning I saw a post on Facebook that wasn’t TO me but FOR me.  It said  — HERE’S YOUR DOSE OF BLUE SKY.    I think sometimes we just need to look for it.   Seek and you will find.

Since  I wrote today that “Bob stinks” I thought it appropriate to add this…

Bob has started to experience another side effect – diarrhea.  We were expecting it, so I had purchased some large incontinence pads for him to wear.    I figured that if he had to ride in my car to the clinic every day….I wanted a little protection.    It was beautiful outside today so I talked Bob into taking a walk with me.  Halfway down the street he told me that he didn’t know how women wore those pads….they were really sticky.  I had to think about it for a minute.  “Bob, you put the sticky side down right?”

It was a quick walk….lesson learned.

P.S.  I got his permission before posting this. Tooooo funny.