Maybe Not Everyday Afterall
I set out with a goal to update my Caringbridge everyday.  I then let the weekend slide with a “weekend update” instead of an update on Saturday and Sunday.  I’m finding that updating everyday is not going to be an achievable goal.  So let’s just cut a deal right now.  I’ll update as often as possible and definitely when things are happening, but just not everyday.  This journal for me is not just a way to keep you informed, but also a way to compose my thoughts and emotions.  That may not happen everyday, but will definitely happen often enough.  If I don’t post for a day, just assume I’m resting peacefully or enjoying time with the fam.

Going Back In Time
I was going to write about what I should have been doing on Monday vs what I did.  Monday’s post got a little long, so for today’s post I’m going to write about my “shoulda Monday” today.

Monday, June 15th (What I should have been doing)
On Monday, I should have woken up to Lindsey’s kiss goodbye as she leaves for her normal Monday at work.  A few minutes later I should have heard my alarm as a 2nd reminder to get up.  And then 10 minutes later I should have heard my snooze alarm as a final warning of the day ahead.  I should have gotten up to get myself ready.  I should have turned on the lights in the girls room and Tucker’s room as kind of a nice way to say “your butts are getting out of bed soon, be warned”.  I should have picked up the clothes for each kid that Lindsey lays out for them the night before.

I should have changed Sydney while she kept sleeping.  Taking off a diaper, wiping her with wipes, and getting her fully dressed; even then she doesn’t wake up.  She grabs her blanket tight to her face and I cover her back up fully clothed for a few more minutes of rest.  I should have tried to dress Natalie, only to have her tell me she will do it herself.  And she does.  I then should have gone to get Tucker and carried him into the girls room.  He doesn’t sleep like Sydney, but he still yawns and cuddles with his blankies while I get his clothes on.

At this point Sydney should have her eyes open and when I tell everyone I’ll be folding blankies, Sydney tightens her death grip.  I should mention that Daddy will be right back and then I should go into my room to put on my polo shirt and turn off all the lights.  I should then return to a room where Tucker is hugging his blankets goodbye before he gives them to me, Sydney is huddled with her blankets and doesn’t want to let go, and Natalie is busy folding her blankets on her own because she wants them folded a certain way (must be hand flattened and all corners must match up).

After I should have been done folding blankets and Natalie carefully hands me her folded blankets, I should have stopped at the top of the stairs.  There, with blankets in hand, all three kids ask me to carry them downstairs.  I should have taken 2 the first trip down (blankets in hand) and then I should have gone back upstairs to get the other (who is already saying “daddy, daddy, I’m still up here).  I should have placed the blankets in the bag  that Lindsey graciously packed and I should have placed that bag and a cooler in the van.  As the kids loaded into the van, I should have grabbed my work laptop, keys, water, and Kashi bar.  With all that said, I most likely would go back into the house for one of those items because I forgot it.

I should have played negotiator in the van as everyone wants the same seat.  I should have played peacemaker in the van as someone was getting ready to climb into a seat and then was pushed away.  I should have backed out of the garage around 735 and exclaimed “Ok, we’re going to miss Lindsay’s!”  I should have heard little voices asking questions and making observations.  Voices excited by school buses, excavators, horses and the like.  Curious about cars on the side of the road and little boys and girls who are out in their driveways.

I should have dropped the kids off at miss Lindsay’s.  Taking their shoes off and putting them in the closet.  Passing along any necessary information for the day.  I should have tried to leave, only to be stopped by a voice, or 2, or sometimes 3 that say “Daddy, daddy, wait.  I need a hug goodbye.”  Some times one hug turns into 2 and sometimes one of the kids will need 3 or 4 hugs to say goodbye.  I give them all out willingly and drive away with a smile on my face.

As I turn right out of the driveway, I should be changing the radio station to Mike and Mike.  I should be zoning out for a 45 minute commute to work.  I should be using my keyfob to walk into a great job and start a day working with great people.  I should be sitting next to two coworkers talking about weekend plans, softball, beer and the like.  I should be solving problems, thinking of creative solutions, motivating people, moving my company forward and of course throwing darts and having that beer we we’re discussing earlier.  Towards the end of the day the conversations of my cube mates might start up again.  I should be hearing one of them talking about the spreadsheets and Power Points she has been working on.  The other talking about some motivational emails he read and forwarded.  I should hear an “Oh Robbie Poo” over the wall or be told “Super Great!” when I ask someone how their day is going. Then someone may walk up and I do my best to not break out into “This land is your land” because they asked me not to.  I should walk into the break room to pour out my coffee and if I’m lucky I should see our VP of Engineering with his normal endearing smile.

I should then be leaving work.  I should be picking up the kids and hearing about their day.  I should be taking them home.  I should be cooking them dinner.  I should be playing with them and running around.  I should be getting their jammies on.  I should be reading books to them.  I should be singing them to sleep.  I should get all of that done before Lindsey gets home from a long day. That is what a Monday should look like.

Monday, June 15th (What I was actually doing)
My day still starts out with a kiss goodbye from Lindsey, but all similarities end there.  There is no alarm clock to go off.  I sleep to conserve energy so I can face the day.  I check the cameras in the kids rooms just to make sure they are sleeping.  I know Grandma Jane will be here soon to wake them, dress, them and take them to Miss Lindsay’s.  All the things I cherish to do on a normal Monday.  I do wake up before the kids leave, so I dawn my surgical mask and leave the protection of my room to say goodbye.  I then lather up with hand sanitizer and return to my room.

With the kids gone I forgo my mask and eat the leftover cinnamon rolls that Grandma Jane has made for the kids.  I drink a glass of juice in solitary and think about the day ahead.  I go back up stairs to get ready and as I sit on the toilet, I begin to cry.  Emotion comes out at different times and for different reasons.  I don’t stop the tears.

I finish getting ready.  I feel a bit nauseous so I pack some graham crackers and a drink.  I eat and drink all of it on the way to Simon Cancer center.  I pull up to the hospital, forget that I can use valet parking and then drive around the block so I can pay $5 for valet vs who knows how much for standard IUPUI parking garage rates.  I walk into the hematology clinic and have my visit.  I run downstairs to grab a bite to eat in the 10 minutes between my outpatient appointment and infusion appointment.  All the while I am texting my Aunt Marquita who is in the same hospital with my Uncle Jim.

I show up at my infusion appointment.  I’m led back to a chair.  I pray for those I can see from my chair and for those that I can’t.  That they would win their battles.  That they wouldn’t be in pain.  That they are getting the support they need and that they know Jesus.  My time in the infusion center passes quickly and I go up to the transplant floor to visit with my aunt and cousins.  It’s great to see family.  It’s great to be in the comfort of those you love and know.  I can’t see my uncle because I have a slight fever, but I am still able to visit in the waiting room.  Feeling tired, I excuse myself and head back to the valet.

I’m in my car, heading home.  I can tell these few hours out have taken it out of me, but I have an independent streak and I want to do things that help keep my stamina up.  I arrive home.  I wash my hands to rid myself of germs I might have picked up and then I sleep.  I sleep hard from a few hours of being out.  Something that wouldn’t have phased me 2 weeks ago has taken all that I can muster to accomplish.

Grandma Jane picks up the kids and brings them over.  She also brings me some food, which always brings a smile to my face.  She takes the kids to VBS.  I eat some and rest some  more.  Soon Lindsey comes home.  The kids come home and the bedtime routine begins.  The bedtime routine I can’t really participate in.  I don’t have the energy and little arms don’t always cover the coughs that come out of little mouths.  I stay in my room.  Air purifier one.  Sometimes still with my mask on for extra protection.  I wait until the kids are asleep and then I sneak into their rooms.  I give them hugs and tell them daddy will play with them again one day.  I whisper I Love You’s and tell them about all the things we will do together.  Daddy is fighting kids.  Daddy wants to be here for you.  Daddy wants to see you grow.  Daddy wants a Monday full of the things I should be doing.

A Duck Dynasty Prayer
Father God, I weep at your feet.  I beg for the things I want, but I know you are in control.  I long to know how this story will end, but I will take one day at a time.  I will take one step at a time.  One foot in front of the other as we walk this journey together.  I know you will carry me.  I know you will hear me.  Father God, please grant comfort to my kids.  Please answer their questions in their hearts when they aren’t sure why daddy can’t get close.  Aren’t  sure why daddy can’t swing them or toss them in the air.  Aren’t sure why daddy always wears a mask that they can’t touch.  Be with my wife who carries a burden I never meant to leave her with.  Who acknowledges you in this journey and with simple determination says “we’ll do what we need to do” when we have the hard conversations about a path forward.  Thank you God for all those in my life who offer up support, a kind word, an email, a verse, a prayer and the list goes on.  Please be with those who may not have the same support system.  May your love touch their lives through any way possible.  Thank you God for this journey.  It’s not one that I would have chosen on my own, but I walk it willingly with you.  Thank you for another day.

My Good Buddy Dr. Cripe
It’s always bittersweet to see Dr. Cripe.  Sweet, because he’s a nice guy and a very intelligent doctor.  Bitter, because the only reason you see Dr. Cripe is if you or a loved one have cancer.  Today was my first visit with Dr. Cripe post discharge, and as visits go, this was a pretty normal one.  He was happy with how I am doing at home and glad that he didn’t keep me in the hospital.  We chatted through a few questions and then he scheduled me for a follow up on Monday.  Sounds like I will be in clinic every Monday for a checkup.

Waiting on the Swabs
No word on if my sister and I are a bone marrow/stem cell match.  I almost abbreviated that as a BM/SC match, but then realized BM has other connotations.  I don’t think we have to get tested for that and if we do, I’m not looking forward to the swab.

Vincristine
Today I received my last dose of chemo for Cycle 1A.  If all goes well, we will not progress to Cycle 1B.  I did ask if there was any benefit to getting Cycle 1B.  In my mind, the more doses to kill the cancer the better.  Apparently my mind and medicine don’t agree, as Dr. Cripe said there really isn’t any data to show improved outcomes but there is risk with any additional cycle of chemo.  So the best course of action will now be moving on to SCT.  Keep praying that Michelle is a match.

Blowing Bubbles During Outpatient Chemo
The biggest difference in my chemo today was that I received it as an outpatient.  Every dose of chemo I’ve ever gotten (and I’ve had a few) was given to me as an inpatient.  The overall outpatient process was very efficient.  I checked in, I was called back, I got hooked up to the pee machine (aka Normal Saline via an Alaris Pump) and then my chemo came.  Apparently Vincristine is some potent stuff.  I received 2mg of it, which is the max dose.  Some of the other chemos I take are dosed in thousands of mg.  The Vincristine does not go through the Alaris pump, but is given by gravity.  I mention this because once the bag runs out, there is still vincristine in the IV line that needs to get into my body.  The nurse started the saline again to flush the vincristine, however we both noticed an air bubble in the line.  In my medical training (which includes a fair amount of Movies and TV) air bubbles are bad.  Air bubbles send you into cardiac arrest, and I’m pretty sure the goal here is to save my life not end it.  However, in my nurse’s medical training (which presumably included an accredited college and continuing education), bubbles of that size are pretty routine and not dangerous.  In the end, we sided with her medical opinion.  The bubble was actually quite helpful as it indicated where the vincristine ended and the saline began.  Once the bubble disappeared into my veins, we knew my dose was done.  I’m still not sure what happened to that bubble.  I presume it’s still floating around in me somewhere because I haven’t farted all day.

Bieber Fever?
When the kids have a fever, I like to tell them they have the Bieber Fever.  It’s harmless, because they have no clue who Justin Bieber is (and as a responsible father, I’ll try to keep it that way), but it’s funny to hear them talk about the Bieber Fever.  On the other hand, it’s not fun for daddy to get the Bieber Fever.  When I was in clinic today, the damn numbers kept rising as my temperature was taken.  We went past normal and headed into the 99’s.  Luckily it stopped at 99.8 (ok, actually it stopped at 37.7 because hospitals use the metric system).  Still, given our current circumstances, 99.8 is concerning.  Now 99.8 doesn’t count as Bieber Fever.  Really it’s just an elevated temperature.  It probably is slightly up because of my WBC count (or lack thereof).  However there’s no way to tell if it will continue to go up and turn into the dreaded “Fever @iuhHematology” tweet or if it will simply return to normal at some point.  I asked Dr. Cripe if there is anything I should be concerned about.  He gave me a smile and a shrug (or for you savvy texters out there, a  🙂 and a  ¯\_(ツ)_/¯) and said there’s really nothing to be concerned about unless the Bieber Fever does appear.

And the Powerball Numbers Are:
It’s kind of funny what is considered normal for a blood cancer patient.  My WBC is critically low.  Like low low.  Like normally you’d get admitted kind of low.  However, for me it’s a sign that the chemo is working.  Heck, my WBC may even hit zero.  And as a general rule of thumb, it’s not good when any cell in your body that should be measured in the thousands reaches Zero.  So without further adieu (well, actuall a bit of adieu.  Now’s a good time to mention my quarantine to my room continues.  Tucker is better, but with a WBC this low we aren’t taking chances) here are tonight’s Powerball numbers:

All numbers are in thousands

WBC- 0.3 (normal is 3.6 – 10.6)
Hemoglobin- 10.5 (normal is 13.4 – 17)
Platelets- 71 (normal is 150-450)

Dr. Cripe believes that I will need a blood transfusion next week.  Won’t that be nice.

A Curious Thing
I promise to hold judgement on this one.  I won’t make sarcastic comments about how this obviously puts patients first.  Nor will I mention that IU Health had an operating profit of $795.3 million in 2014.  I’m going to skip over all of that.  Even the $3.6 billion in cash and investments that IUH has on hand.  Let me explain.

The hematology clinic at IU Simon Cancer center has a lab to run hematology tests.  Makes sense seeing as the primary labs that are drawn in clinic are hematology related and considering that by definition hematology is the study of blood; so you really need to draw some blood to have something to study.  Also consider that blood results need to be back so that there is something to discuss with the patient.  Finally, let’s go ahead and make the leap that patient satisfaction is lower the longer the patient waits.

So it was curious to me to learn that IUH has, for now, decided not to run CBCs at the hematology clinic lab.  CBC stands for complete blood count and is the test that measures the number of cells in your blood (apparently since Powerball is copyrighted they had to call it something more generic).  It’s a pretty standard hematology test.  Under the new process, the hematology clinic must tube the blood over to Riley to be run. Granted, it is still run as a STAT lab, but tubing does add some time.  And then someone at Riley has to received it among all the other STAT labs coming in.  Hematology staff can’t just walk over to the lab and say “Hey, how soon we getting that CBC?”  In the end, it seems to me like this new process just increases the amount of time it takes to get results back.  I suppose someone smarter than me has run the numbers and decided there won’t be an impact to patient care.  And I can say with complete confidence that there is no way that profit played into this decision and trumped patient care.  Wait a sec.  That was sarcasm. Damn, and I was doing so good.

So What Now?
Now we wait.  And most likely, now I sleep some more.  I’ll have labs drawn on Thursday.  If a transfusion is needed, I’ll probably get it Friday.  If not, I’ll be back in clinic on Monday for labs again.  We should hear this week (hopefully, as long as they haven’t moved the HLA lab to California or something) on the Bone Marrow/Stem Cell matching.  And more decisions will flow from there.  I’m also hopeful to hear more from my insurance company on disability and critical illness payouts.  I have a spiffy excel sheet all set to go.  I just need to plug in some numbers so I know what our financial reality will be like.  Stay tuned, for all those updates and more…

A Duck Dynasty Prayer
My Jesus.  My Savior.  Lord There is None Like You.  I sing those lyrics to you Oh God.  I sing their truth.  I sing their comfort.  I sing their healing.  Healing O God is what I desire.  While one day ultimate healing will come, I pray for healing on this side of heaven.  I pray to be cured because that is my heart’s desire God.   A desire to grow old with my wife.  A desire to see my kids grow old.  A desire to serve you Lord.  Fill me up Oh God as I empty out.  My body is weak but my faith is strong.  Deliver me from this disease.  Comfort me and comfort those who battle in the rooms and infusion chairs next to me.  Let those that know you rejoice in your word and let those who don’t know you find your truth.  Thank you for my first cycle of chemo.  There are side effects to navigate, but the medicine is in.  Let it do its work God.  Let it kill the cancer.  Every. Last. Cancer. Cell.  Thank you for your healing hand.  Thank you for another day.

No News is Good News
Not much is happening, so I’ll keep the weekend update short.  Tucker still has a fever and I still don’t.  Sorry buddy, but that is good news in my book.  The girls played on their water slide today and it was outside the 2nd story window of our bedroom.  I was able to watch them play with cousin Laney and hear the laughs and giggles coming through the open window.  We bought the water slide last year at 50% off and still debated the purchase.  I can definitely say it’s been a good buy as they continue to get a lot of use out of it.  I’ve included a picture and a video of the fun.

Monday Funday
On Monday I will see Dr. Cripe.  I’ll also get my last does of chemo for cycle 1a.  I’ll post another update on Monday night to keep you in the loop.  Until then I want to post the lyrics to In Christ Alone.  If you’ve never heard the song, give it a listen.  I’ll post later in the week about why I like the song so much.  Especially the first and last verses.

In Christ Alone
In Christ alone my hope is found;
He is my light, my strength, my song;
This cornerstone, this solid ground,
Firm through the fiercest drought and storm.
What heights of love, what depths of peace,
When fears are stilled, when strivings cease!
My comforter, my all in all—
Here in the love of Christ I stand.

In Christ alone, Who took on flesh,
Fullness of God in helpless babe!
This gift of love and righteousness,
Scorned by the ones He came to save.
Till on that cross as Jesus died,
The wrath of God was satisfied;
For ev’ry sin on Him was laid—
Here in the death of Christ I live.

There in the ground His body lay,
Light of the world by darkness slain;
Then bursting forth in glorious day,
Up from the grave He rose again!
And as He stands in victory,
Sin’s curse has lost its grip on me;
For I am His and He is mine—
Bought with the precious blood of Christ.

No guilt in life, no fear in death—
This is the pow’r of Christ in me;
From life’s first cry to final breath,
Jesus commands my destiny.
No pow’r of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home—
Here in the pow’r of Christ I’ll stand.