Day +12 Our Bracket

Everyone is caught up in March Madness.  Even when we aren’t spending all of our time in hospitals and clinics…we really don’t keep up with basketball.  But…we are keeping up with a different sort of bracket.  When I worked in the Washington University Cancer Center, we used to chart our patients blood counts in a bracket.   >——<

WBC >—-HGB/HCT—-< PLT : this was our bracket, these were the numbers we followed.  Now Bob and I are following this bracket again.  As soon as his numbers normalize……we’re out of our March Madness.

Today WBC 0.7 (700 Holly!) still waiting on ANC…..(absolute neutrophil count; this ANC number needs to be above 500 for Bob to be off of his neutropenic precautions)

HGB/HCT  9.3/26.8 (explains his shortness of breath and exhaustion….may still get blood transfusion this week)

PLT 34 (probably looking at another platelet transfusion too)

So we’re still IN IT….still fighting through our bracket.  But all is well.  Feeling very blessed in it all.

Aimie came by this morning and brought me coffee …. At 730 am on a Saturday. She’s a good daughter.  We are blessed.

Day +11 Engraftment

Katie and Jordan came over last night and fixed me dinner! Love, love, love.

And today is a great day too!  Even though I woke up and cried in the shower.  That’s not an uncommon occurrence though, crying isn’t all bad.  Sometimes it’s a little cleansing.

The doc who saw Bob today said those magic words….we are seeing signs of engraftment.  Blood counts show white cells are growing….Bob has neutrophils!!!  White count up to 200.

Platelets down to 8, so we’re at the hospital now for a platelet transfusion.  Still have a bit to wait for counts to come out of the danger zone, but we see light at the end of the tunnel.  (Rusty always says “I hope that light at the end of this tunnel isn’t an oncoming train!”).   Nope,  no train wrecks this time.  Been there, done that.

Had our usual nurse this morning, love that girl.  Talked about faith and God again.  Good day at the clinic.

Mom…..she needs a good day.  Told me yesterday that she is weary.  Weary.  I hate that word.  This morning she said “I am just finished feeling this way; so tired of it all.  But when I am weak God is strong in me.  I need Him to take over now.”

God hear her, Hear her cry.  Hold her up, strengthen her.  See her faith.  She is leaning on You.  Pick her up.  Lift her head.  I pray for her as Jesus did for Peter–that her faith would not fail.  JC “But I have prayed for thee, that thy faith fail not. ”   God help her to keep beleiving, “Daughter, thy faith hath made thee whole”. Engraft new life into mom today God.  Please.  

i believe.

Fighting Giants

I’ve been reading my Bible every day.  Today I read in the book of Numbers about Caleb.  He went with a group of guys to scout out the promised land for Moses.  All the other guys in the scouting crew freaked out a bit, said that the people of the land were like giants and that they SAW THEMSELVES as grasshoppers in comparison. Not Caleb.  He was ready to go.  He was sure that they could overtake these people and that land.  He had great faith in what God had said.  If God said we could have it, then let’s take it.  Don’t fear.

I want to face the giant (cancer) in my life like Caleb did.  No fear.  And let’s kick it’s butt.   Take our lives back.  I want us to be a family of Calebs.

God promised healing.  I choose to believe in healing.  No matter how hard the fight is, the outcome is sure.  Giants fall.  Caleb’s giants fell.  Goliath fell.  Cancer will fall.

Thank you God for giving is big faith!  Like Caleb. Thank you everyone who is praying for us along the way.  Sometimes I feel like we’re being carried by your prayers and your faith.

 

Day +10 Tired ramblings

A little stream of consciousness here:  Did I sleep at all?  IV antibiotics stopped at midnight, flushed and cleaned the lines, checked the medication book…nothing due until 4 am…took his temp, afebrile…I slept for about four hours there.  Up at four for drugs, down for an hour and back up at 530 to get IV ready again…am I forgetting anything?  Nope, except to sleep!  Need to nap today.

Delayed our drive to clinic, waiting for Bob to stop puking.  I’m gonna miss my coffee stop again.  I could make it at home, but afraid the smell will make him sick.  He does not enjoy coffee the way I do.   Drove to clinic with drugged, fun Bobby again.  I’m too tired to find his ramblings entertaining.  I just want him to shut up.  (I don’t care if we’re late, I NEED coffe today).  I’ve decided that it doesn’t matter how much you love someone, no matter how long you’ve been together…you really aren’t supposed to spend two weeks of 24/7 uninterrupted time together.  I just need to get away for a few hours.  But…we only have a couple more days of quarantine, then I’ll get out for some me time.  Hopefully his other two care-takers (Aimie and Katie took the care taker class with us) will be over their head colds soon and I can entrust his care to them for a few hours.

Did I tell you guys this one yet?  (humor me if this is a repeat…it is the one amuzing thing fun Bobby said today). Earlier this week Bob watched a car pull out in front of me and said, “1 out of 75% of drivers can’t drive”. I didn’t understand and questioned him, he corrected himself, “oh, I meant 95%”.   Uh-huh…this is the drugs talking.  I just laughed as he tried to explain his logic.  (Cindy & Paula—I think it has something to do with osmosis)   Anyway, this morning Bob was complaining about my driving and said, “Don’t tell me you’re one of the 75%!”.   Somehow this makes sense to him.

Counts still low (sorry Holly…white count still ‘preparing’ to jump up…but not yet).  Creatinine still high.  Saw Dr. M today.  He’s not too concerned about the kidneys either.  “We’ll just cutback on a few antibiotics and the antivirals and watch him.  The Creatinine will come back down, it’s just the melphalan.”  woo- hoo, we get to change the IV antibiotics to twice a day instead of three times a day.  = more sleep.

Had a great conversation with the nurse about God.  🙂 she wants to go on a mission trip.  We told her about the awesome experience we had on ours.

Mom is good, really good.  She came over yesterday and visited.  I did not cook her dinner.  We ate ice cream.

I think I’ve rambled enough.  More later.

Day +9

Administered Bob’s IV antibiotic this morning, pushed him to take the good drugs so he doesn’t puke in the car, and made it to the clinic by 9.

WBC 100 today.  HCT 34. PLT 20.  Great bump from PRBCs but not such a good PLT bump.  Oh well….patience.   The fever work- up requires a chest X-ray,  so we get to go visit the hospital again.

The Creatinine is moving in the right direction too, 1.6 today.  The docs are still a bit concerned about kidney function.  We’re not concerned.  We will continue to receive a liter of fluids IV every day at clinic, and now we’ll also give a liter of fluids at home every day.  “Just keep him hydrated”, the nephrologist told us when he knew Bob was going for transplant.  He’ll be fine.  His kidneys are great.  Remember all the prayers over those kidneys?  They have no choice but to perform as God created them to.  Amen

Mom said she and dad went shopping this morning.  Good, that means she’s feeling better.  She’s going to come over today and visit.  yah!!!  I may just cook her dinner.

Weird side-note:  so the nurse that came last night was on-call.  She didn’t act too happy to be there at 11 pm.  Complained a lot about getting calls late at night.  Weird…she was there to help us…Not complain to us.   Do people realize the bad attitudes they carry around are unattractive at the least…and could even be quite harmful to others.  Note to self:  be NICE no matter what.

Fever

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.

Day +8 Flashbacks

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….

Day +7 Pink Floyd?

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.

Day +6 Good drugs

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!

Still +5

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.