Confessions of a Chemo Kid

My Good Buddy Dr. CripeOP Chemo
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.

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