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.

Bob stinks!  The preservative that the stem cells were frozen in smells very strongly of creamed corn….or some say garlic…or strong tomato soup.  Whatever it is…it stinks.  He excretes the preservative through his lungs, so every time he breathes he fills the air with this lovely smell.

Other than his odor, he’s great.  We stopped by my moms house yesterday on our way home from the clinic and had lunch with her.  Brought her a frosty….”mmmmmm this fuzzy sure is good!”  Then we went to the grocery store, then he called Aimie to bring him a set of blue prints to work on, then he played pool with his dad for a bit.  All-in-all a great transplant day.

Today we had a quick clinic visit.  Bob just needed some magnesium replacement…a 30 minute IV infusion and we were out of there.

So far, the worst part of transplant is the fact that we’ve been separated from our family–and we miss Connor and Blake.  Connor has croup and we can’t be near him, or anyone in that house.  Katie woke yesterday with a cough, so no seeing her for a while either.  Aimie says, “Even though we are divided we are together in spirit.” amen

Mom finished her week of chemo injections.  Worst part for her was the pain.  Her legs, her arms, her belly…she got shot everywhere.  She took Benadryl to sleep at night, and as I’ve already posted – she’s going commando these days.  I think the combination of the two lead to her crazy dream last night.  She called me this morning, “I think I need to see someone about my dreams.  Last night I dreamt that I was going on a date with Britt Hume, going to see Gone With the Wind; but when I came outside all the men were naked.  And Britt was naked!” We laughed so hard I almost peed myself.  She told her doctor about the dream too, he told her if she kept talking like this he was going to have her see the psychologist. 🙂

Laughter is good for the soul.  Bad for the bladder, but good for the soul.

The nurses at the clinic call today Bob’s birthday.  New life today.  Starting over.  Today he gets his stem cell transplant.

We arrived at the clinic at 7:45 am and got settled into a room.  Bob got hooked up to an IV and we waited for the doctor to see him.  After the doctor examined him and said he was good to go…..we waited some more.

Thats where we are now, waiting.  Those who wait on the Lord shall renew their strength.  Amen. 

The nurses have brought the water bath machine into the room, the frozen stem cells are here…..waiting.  He’s had his premeds….waiting.

I hope our strength is renewed in proportion to the waiting.

More later.

Yesterday was a good day for Bob.  Such a good day that the doc who saw him at the hospital told him we could stay home today.  A day of rest.  So today we will rest.

Yesterday after chemo we went to lunch then shopped a bit.  Katie, Jordan and Ashley were with us.   Seemed pretty normal.  Except I got a little freaky with fear again.  I would watch Bob go to the restroom at the restaurant and stare toward the doors, waiting for him to come out.  Waiting…..waiting……waiting…..”do you think he’s been in there too long?”

When we were finally home and he was resting on the couch watching the Big 12 wrestling championship on TV and telling the Mizzou wrestlers how to score points, I relaxed.  He’s okay.

Then when he fell asleep and began snoring heavily, I looked at him and out of nowhere I thought, “Oh my gosh! Bob has just had a lethal dose of chemo and now he’s laying here on the couch!!!!!!!  Holy crap!  What if he has a seizure?  What  if he gets sick?!”

But he will not.  This is not last time.  This is new.  Apples and oranges Teresa said.  Apples and oranges.  I had to get out my bible and start reading OUT LOUD (that’s when you know it’s serious) 🙂   I asked Bob to recite some stuff out loud for me too.  I asked him, “You’re gonna be okay right?  You’re not gonna react weirdly to this?”.  He is sure he’s okay and will be okay.  OK,  fear gone.

Apples and oranges.

Today is the same as yesterday, except we’re in the hospital instead of the clinic.  We’re in an old ICU room, no windows and lots of memories.  Yuck.

Bob feels great though.  Had decadron yesterday and today for a pre-med to the chemo.   He loves it.  Makes him hyper, and very happy.  Today will be another really good day for him so we’re going shopping and out to lunch after chemo.

No fear today, thank you God.  But I think my dad is taking the fear for all of us.  He needs to watch his words.  I think I need to talk with him.  Tell him to take every thought captive, examine his thoughts and reject the ones that don’t line up to the words that’s he’s praying every day.  Fear sucks.

One funny update regarding mom:

The shots they are giving her really hurt.  She’s got bruises all over and she says the pain is like a bad burn.  (that’s NOT the funny part)     In order to not irritate the tops of her legs every time she uses the restroom, she’s opted for not wearing underwear.  Yep, she’s going commando!  So yesterday when she went in for her shot, wouldn’t you know it the nurse asked to see her legs.  Mom said she had to go to the restroom with the nurse and explain the situation.  Hilarious!