For Shame Dear Readers, For Shame
I like how all of you just let it slip by.  Didn’t even bring it up to the kid who is battling cancer.  Lest you think my chemo brain would get the best of me, something occurred to me today.  One day last week I posted twice to Caringbridge.  Yes Ladies and Gents, that means you had a bonus issue of Rob for a bit and the other night when I missed a post didn’t mean I was behind.  It actually means I’m right on track.  And here you all let me think I owed you one.

Of Red Alerts and Lockdowns
I’ve been roaming the house somewhat freely.  As previously mentioned I take some caution around the kids, but overall I’ve wandered the house when I’ve had some energy and have even taken a few steps outside.  Today that all ended.  Tucker has a fever.  Now kids get fevers all the time, but any fever for me is a one way trip back to the hospital.  They don’t even tell you to wait it out a bit to see if your temp goes back down.  It’s simply a call to the Hematology office, you say “fever”, and they reply “we’ll have a bed ready for you.”  Actually, I wouldn’t be surprised if I could just tweet “Fever @IUHhematology” and show up 30 minutes later to a team of nurses and syringes filled with antibiotics.  So with Tucker having a fever, I’m now on lockdown.  OCD Lindsey of course came into our room to wipe down germ prone surfaces.  Hypochondriac Rob is currently typing this with a surgical mask over his face and an air purifier not but 2 feet away.  I’ve also been rubbing myself with copious amounts of hand sanitizer (only in appropriate placed of course).  And I expect this will be the way it is for the next day or two because the only F word I’m more afraid to utter than flutter is Fever.

Uncle Jim Gotsta New Liver
If you thought I was the only one in my family getting a transplant this summer, you’d be wrong (unfortunately if you thought I was the only one in my family battling cancer, you’d be wrong on that account too).  My Uncle Jim had a heart surgery in 1973, well before many safety measure were put in place for the blood supply.  Through a transfusion he was infected with Hepatitis C.  The good news is that Uncle Jimmy got his new liver last night.  He’s resting at an IU Health hospital and is doing well.  Please join me in praying for my uncle, his recovery, and a continued vigor for life.  It would just kill him if a prolonged hospitalization caused him to miss Hillary Clinton’s visit to Indy later this month.

I will also mention that my Aunt Liz is finishing up a year of chemo to fight breast cancer and is in remission.  My uncle Claude is battling  a rare form of lymphoma and is making great progress.  As one person said, us Culrosses are a stubborn bunch and won’t let a little sickness get in the way of living our lives and praising our God.  Expect to see the 4 of us at Labor Day family reunions for years to come.

IU Health, I’m (almost) Breaking Up with You
This is a preface to the next section below.  I wrote that section 5 hours ago when it was fresh in my mind.  I’ve left it the way I wrote it originally.  Two things still bother me about my interaction today.  The first is how the organization I am counting on to save my life could still be so inept in certain places.  I worked at IU Health from 2003-2014 and saw many improvements along the way.  Unfortunately there are still some basic improvements to be made.  The 2nd thing that bothers me is that today I didn’t hear “I’m Sorry” or “thank you for suggesting that”.  All I heard was basically “That’s the way it is and we’re still looking into it”.  I hate to spoil the surprise, but the “it” they are still looking into is the charge for a visit in March of 2014.  I’m quickly running out of fingers and toes to count how many months this is taking to resolve…

Oh, IU Health Patient Financial Services, We Really Need to Work This Out
It’s no secret I’ve had my difficulties with IU Health Patient Financial Services (PFS).  Through many years of being an IUH Patient, I’ve seen successes at PFS and failures.  The fact of the matter is, I just don’t have time for the failures anymore.  Receiving bills months after the fact and incorrect bills at that is just not acceptable in this day and age.  I buy a drink at Starbucks and my phone pops up my new balance a few seconds later.  I spent time on the phone with PFS in May to resolve an issue and today I received the exact same bill with the exact same issue that was supposed to be corrected.  The response from PFS…”We are still investigating it”.  Now, I mean this when I say it…it is perfectly fine with me that the bill is still being investigated.  But why in this day and age if my charge is under investigation do I receive the same bill again with the minimum payment now doubled because I didn’t pay last time (per instructions).  This is not customer service PFS.  This is not something that helps you save $1,000,000,000 as Dan Evans wants.  This is basic accounting.  If you are investigating the claim, put the amount on hold while you investigate.  I might also add that it isn’t a good practice from a cash flow perspective to take so long to investigate a claim.  My friends, this charge is from a procedure in March of 2014.  MARCH OF 2014!  When I stated that I’ve called in before and I wish they could put something on the statement so I wouldn’t have to call in again, I was simply told that “sometimes we have to call in to get things straightened out.”  IU Health, this is not premenience.  This is not being 2nd to none.  This is not the strength it takes.  This is basically the sh!t it takes and you’re sh!tting on your patients.

Now, I was as polite on the phone as I could be and didn’t even mention the fact that I was just re-diagnosed with Cancer and will be facing more issues with bills.  I thanked the rep for doing her job and said this was a systematic problem and not a problem she could solve.  However, the kicker for me was when she asked if I wanted to go ahead and take care of the $14 balance I had on my account from a May 8th visit.  So yes IUH, let me rush to pay that $14 from a little over a month ago (which by the way doesn’t even show up on the bill I received today) while you drag your feet on the $1,800 charge from March of 2014.  I’ve known and still know today a lot of great people that work in Rev Cycle, but guys you have to have to have to get this fixed.  I’m just one patient out of many that are impacted and really it shouldn’t take this long to figure out.

The (almost) Straw That Broke the Camel’s Back
I keep using “almost” because the reality is I am literally fighting for my life here and now is not the time to change doctors or medical institutions.  The sad truth though is had it not been for my relapse, I am certain that today would have been the day I stepped away from IU Health as my primary source of medical care.  I am a very dedicated person.  I have passion for the things that IU Health does, but there comes a time when enough is enough and I (almost) reached that today.  I hope PFS gets things turned around as the healthcare landscape in Indy is already competitive and will just become more so.

My Sister
I love my sister.  It’s true I stuck her hand on a cactus once.  It’s true she wouldn’t play games with me more than once.  But the fact remains that we love each other and would do anything for the other.  My sister is the quickest and best way to an SCT.  As mentioned, there is a 25% chance we will match for an SCT.  Earlier this week she received a test kit in the mail, which for lack of a better explanation, contained 2 q-tips.  She swabbed the inside of one cheek with one and the inside of the other cheek with the other.  She then packaged them up and prayed over the envelope before mailing them in.  Assuming the HLA lab received the samples today, I could know by this time next week whether we are a match or not.  If we are, then SCT becomes a lot closer.  If we are not, then I still put faith in God that I will have a match somewhere out there and perhaps Michelle can help save a different Rob.

Bethematch.org
Just a quick reminder that if you are between the age of 18-44, you can register for free at bethematch.org.  You must be willing to be a donor to anyone and there is only a 1 in 540 chance that you will ever donate, but it’s a really simple way to save a life.  Hopefully you agree with me that any life is worth saving, so please consider registering.  I would if I could.

A Duck Dynasty Prayer
I’m mad and I’m frustrated.  Both are ok, but neither are the feelings I want to hold onto tonight.  Help me to let go.  Help me to forgive.  Help me to fight for what is right, but to do so in a way that will bring change.  Help me to be a voice to those who have no voices.  Help me to navigate this class 5 rapid known as healthcare.  Father God, it ain’t easy, but then again you never promised it would be.  You did promise me one thing though and I hold tight to that.  I hold tight to you.  I will drink the living water and I will not live in a house that is built upon the sand.  You are my rock Lord God.  To you I call out.  To you I give thanks.  To you I will l listen.  Please guide my voice and guide my hands.  Let me walk humbly in your path.  Thank you for another day.

Missed a Day
Apparently I now owe you an extra update.  I had been trying to do daily updates, but missed last’s night’s due to a $#@&*ing Light.

The $#@&*ing Light
So it’s no secret that I don’t have much energy.  It’s getting somewhat better, but still not great.  The more I push it, the more tired I get and the harder I sleep.  I find I have a good 30 minutes of energy to get minor things done.  After that, it’s just kind of down hill.  An update on Caringbridge takes 45-60 minutes, so it’s somewhat of a battle to get one out right now.  But that is before taking into account the $#@&*ing Light.

We are getting rid of cable.  That was actually in the works before I relapsed, but budget wise it makes even more sense now.  We have had u-Verse for many years but are switching to Comcast because their internet only plan is cheaper and apparently I like poor customer service.  The Comcast guy set up our new internet when I was in the hospital and when I returned it wasn’t working.  I’ve been working with computers since middle school and have done network setups since college.  I sat down to fix the internet, thinking it would be a quick fix, but that was before the $#@&*ing Light.

Trying all my tricks (which at a basic level involves turning everything off and back on again), I wasn’t getting anywhere.  No matter what I did, that $#@&*ing Light wouldn’t change.  I totally reset the modem.  Totally reset the router.  Checked my laptop settings and even tried some automated Comcast support.  I just couldn’t figure out the $#@&*ing Light.

Now, I’d like to blame the cancer or the chemo.  I think I have a pretty good case to blame fatigue, but after about 45 minutes it hit me.  What if the blinking light WAS supposed to blink (and I bet you didn’t count the symbols and thought I was using a different adjective).  Sure enough, somewhere along the way I had actually fixed the internet.  I just didn’t realize it because the u-Verse internet light is solid when it works and blinks when it doesn’t.  Apparently for Comcast, a blinking light means things are working, so the problem is now solved.  Damn $#@&*ing Light.

My Third Day T-Shirt
Yesterday was my first full day home from the hospital.  I wore my Third Day t-shirt.  Why does that matter you ask?  Because my Third Day t-shirt was the one I was wearing the day before when I was discharged from the hospital.  The astute reader of Rob will remember that I did take a shower (before soiling my sheets) so it’s not like I just never took it off.  No my friends, I pulled a clean Third Day t-shirt from the closet, not 24 hours after I had been home because my wife rocks!  I don’t know how she keeps up with everything, but somehow she managed to do laundry in the midst of everything else going on.  I’m not only married to my best friend, but the most amazing person I know.

When Did They Grow Up
I was only gone for a few days, but it seems like the kids aged so much.  I know they aren’t doing anything they weren’t doing before, but it just seems like they are so much older.  Tucker (who will be 3 in July) engages me in full sentences that seem like they should be beyond his grasp.  And the girls talk to me like they know exactly what is going on.  Lindsey worked today (picked up an extra shift, again, I don’t know how she does it) so she wasn’t here when the girls got up.  They both came into the room looking for mommy.  I told them daddy was sleeping and Grandma Jane would be here soon.  They said “That’s ok daddy.  We’ll just get dressed.  Is it cool, warm, or hot out because we need to know what to put on.”  And after I told them it was hot out, they proceeded to get dressed and play quietly in their room until Grandma Jane came over for the day.  Man they’re growing up.  At least I don’t have to worry about boys yet.

And The Powerball Numbers Are
Now that I’m an outpatient, I’ll get labs on Mondays and Thursdays.  During my first battle, I drove to Methodist hospital to get my labs.  This was necessary for insurance reasons since we had IU Health insurance.  Now that I have Anthem, things are a bit more flexible.  Gone are the days of driving downtown, paying for parking, and waiting in a long line of other people.  Here are the days of making an online appointment and driving 2 miles to a labcorp lab that gets me in and out (With apologies to MACL, but their lab was further away.  Sorry Moyer).  Labcorp faxes my labs to my nurse and I can see results online the same day (IUH results are delayed 3 days).  So all in all, the Powerball numbers are getting a lot easier to get.

WBC- 1.3
Hemoglobin- 11.9
Platelets- 95

So whites are down ever so slightly.  Hemoglobin and Platelets are up a bit.  I should be hitting my low point between now and Monday, so we’ll see what Monday’s numbers hold.  And I still have one more dose of chemo to go.

Singing Through a Blanket
I’m glad I’m home.  I’m not glad I need to think about germs all the time.  Lindsey went to bed around midnight and Natalie started crying around 12:30.  I had my 30 minutes of energy built up, so I dutifully went to work trying to put her back to bed.  The problem being, she was coughing something fierce.  Now I think it was just your normal all day at the pool and I have some drainage kind of cough, but you can’t be too careful. I kept facing away from her and trying to coax her back to bed.  Natalie wanted me to sing Amazing Grace, which is one of her favorite songs, and what daddy is going to say no to that.  So I ended up cuddling next to my sweet little girl, put a blanket over my mouth to hopefully give me some level or protection, and sang a few verses of Amazing Grace.  It’s great to be home!

A Duck Dynasty Prayer
Father God, we are a week into this and I can’t believe that some say it will take up to a year to complete everything.  Can I do this 51 more times?  Can I survive that long?  Can my family survive that long?  We all rest in you Lord God.  We all gain our strength from you.  With you on our side, whom shall we fear?  With you on our side, who can stop us?  We will carry on Lord.  I will carry on.  Each day I will battle.  Each day I will cry out for your mercies.  Each day I will proclaim that you are my God.  Thank you for being by my side.  Thank you for another day.

Who Peed in His Own Toilet Tonight…This Guy!
I knew it was a possibility, but didn’t want to get my hopes up.  When I was admitted, Dr. Cripe said we’d make a determination early this week on whether I needed to stay in the hospital or if I was doing well enough to go home after chemo.  Now, none of this plays into my overall prognosis.  It’s not a sign that my path will be any easier or harder than I’ve been told.  This is simply a reflection of my current response to chemo.  So early this afternoon, with Dr. Cripe’s blessing, Lindsey and I walked out of Simon Cancer Center.  I’m Free!

Time at Home
Essentially my body is going to do what it is going to do.  The only benefit of staying in the hospital is A) I have quicker access to medical services and B) Ya, I can’t think of a B.  If my counts drop too low and I get a neutropenic fever, I will be readmitted.  But there is nothing that staying in the hospital would do to help prevent that.  If I get an infection, I will also be admitted.  There’s some debate on whether I’m safer in the hospital or out, so given the choice, I said out.  Essentially, if I need to be hospitalized, I will just go back.  Things were going well enough that the only reason to keep me was to prevent infection, but I think we can do that effectively at home.

The Best Hugs Ever
Shortly after I got home, the kids got back from the pool and I got the best hugs ever.  Now daddy (can I call myself daddy?) doesn’t have the energy he once did and the kids may take a little while to get used to that.  But overall it’s just good to be around them and for them to be around me.  While the other 2 were playing, Sydney just cuddled up in my arms to lay with me.  That’s the kind of stuff you just can’t get treated with in a hospital.

I Soiled the Sheets
No joke, I soiled our sheets.  Lindsey did a great job of getting the house ready for my return.  Her cleaning OCD will help keep infection away and she had clean sheets all ready to go so I could just slide into bed (because sleeping is about all I do right now).  Now before you get into a bed your wife just cleaned, you always take a shower.  I took said shower, and in the process had to take off the pressure bandage covering the wound where my PICC Line was inserted.  I need to keep the wound covered for 24 hours, so I did what any responsible father of 3 young kids would do.  I found a Frozen themed band-aid and put it over the PICC line wound.  Now, I’m not totally irresponsible.  I did make sure that it wasn’t bleeding and that the band-aid was securely on.  However Frozen band-aids are apparently not rated to maintain sound pressure on a recently closed wound.

I laid down in bed and cuddled up in the clean sheets.  I was actually laying on my right arm, which had the PICC line, and was quite proud of myself that I was essentially adding pressure to keep the wound closed.  However, as we would come to find out, what I was actually doing was most likely pinching the wound in such a way that it allowed blood to flow out.

So fast forward about 15 minutes.  I had fallen asleep in bed with a pillow over my right arm and my head dutifully applying pressure.  Lindsey is cleaning and stands up on the bed to clean the top of the headboard so I don’t get an infection (OCD, remember).  I wake up a bit and move my arm so I can pat her leg or do something loving that doesn’t even compare to all she’s done for me, and then I feel it.  Something sticky on the sheets.  And let me tell you folks, you don’t want wake up to a sticky feeling on your sheets.

She’s a Quart Low
Now, I can’t say how much blood I lost, but I was rather amazed by the size of the blood spot that had formed without me noticing (or being too knocked out to notice).  I had blood all up and down my arm and there was an oval blood stain the size of my head on the sheet (and into the mattress).  Now when you are married to a nurse, this kind of thing isn’t as bad as you would think.  We both calmly took care of the situation, which involved me reassessing my choice of bandage and Lindsey applying all the pressure she could muster to blot the blood out of the mattress.  I found some nonstick bandages and gauze under the sink, which proved to be a better choice than the frozen band-aid.  And Lindsey continued to blot.

Sleep Glorious Sleep
In High School I played the villain Bill Sikes in the musical Oliver.  I did a damn fine job I might add (scared one of the musicians in the orchestra pit out of her chair once).  While one of the main songs in the musical is Food Glorious Food, I found myself cuddled up in my own bed thinking Sleep Glorious Sleep.  After the Frozen band-aid incident of ’15 had settle down, and Lindsey had blotted all she could, I went to sleep.  On her side of the bed of course. I slept all afternoon and evening, only getting up to pee.

And the Powerball Numbers Are:
We promised dropping blood counts and we are about to deliver.  Apparently WBC’s are now 50% off.

WBC- 1.4
Hemoglobin- 9.5
Platelets- 75
ANC – .9

Since I’m an outpatient now, I won’t have labs until Thursday.  The suspense is going to kill me.

More Tomorrow
That should get you up to speed on the latest.  Now it’s time to get back into bed.  But first…

A Duck Dynasty Prayer
Father God, I have no words.  No words to give thanks enough to be home.  Through this journey I’ve always thanked you for each day and now I thank you for each moment.  Each moment here is precious Lord.  Each hug, each kiss, each giggle.  Every little thing I will soak up until I must return to the hospital again.  While I would prefer that time be for an STC, I know there are many steps between here and there.  For now, I will simply say thank you for my home.  Thank you for my family.  And thank you for another day.