This might end up being  a shorter update.  Spent most of the day either asleep or laying down.

Today
No chemo today, which is nice.  But that simply means all the chemo is in me and working both its magic and evil.  The last few days I’ve been awake and out of my bed but this morning I stayed in bed til about noon.  Granted, I had plenty of people coming in and out of the room, but I fell back asleep as soon as people walked out.  Monday is Lindsey’s normal workday, so she wasn’t here for most of the day.  She did stop by after work so we could spend some time together.  I find my fingers trying to cobble a few words together on this laptop but my head is bent over and my eyes are drooping.  We’ll see how much my mind gets out.

Change of Shift
At 7am and 7pm you will see clinical staff gather for change of shift.  They will tell you the intended purpose is to share medical information about the patients they are caring for, but we know that’s all contained in the EMR so they don’t really need to share.  What they are really doing is plotting strategy.  You see, they know they are outnumbered.  There are 24 hours in the day and 25 patients on the unit.  Staff must gather together and carefully plan out how they will enter a patient room with such regularity that sleep becomes difficult.  They sit back at the nurse’s station coyly plotting for one person to go in for vitals, then another 30 minutes later to give meds.  Dietary knocks on the door soon after to take your food order and of course the doctors feel the odd need to round as well.  Then they get tricky.  PT stops by, sometimes RT.  There’s more vitals to be taken and just when you think everyone who has been through who can be, they’ve covertly set your IV fluids to end so your IV pump begins its incessant beeping.  Rumor has it they can also remotely cause the pumps to occlude.  I haven’t figured out how to deadbolt the door yet, but I’m working on it.

Decisions
When you are battling cancer there are big decisions and little decisions.  Big decisions like…Where do I get treated?  Who should my doctor be?  What is the right treatment plan?  How will my family be without me?  What can I do that I am not doing to get better?  There are also little decisions.  One of those little decisions stares me in the face every day.  As you might recall, I pee a lot.  That means I’m in the bathroom a lot and when I wash my hands, I’m staring at myself in the mirror.  I probably look in the mirror more than a teenage girl with kleenex stuffed in her bra.  And when I look in the mirror, there it is.  The nose hair.  Now I don’t have any grooming tools with me.  Didn’t really think I would need them.  So I stare at the nose hair and it stares back.  The question is, do I pluck it or just let the chemo take care of it?  I could try to pluck it, but that will hurt and I’m going to have enough pain as it is.  Unfortunately, I doubt they’ll push some Dilaudid into me just so I can pull a nose hair out.  So there the hair sits.  Neither one of us flinching.  Guess the chemo will have to make it fall out.

Speaking of Urine
To borrow a phrase from the last time around, I was brewing some tea yesterday.  One of the chemo’s I get causes my urine to turn red.  Not like if the Kool-Aid man was peeing kinda red, but definitely something that would make you pause if you hadn’t just received a dose of chemo.  I’d say I had a mild tea color yesterday (unsweetened of course).  Today things are clearing up a bit more.

Pee Fact of the Night
I’m not sure how many times I got up between 11pm and 5am, but I do know they emptied 2.5 liters of pee out of my pee jugs.  Hopefully tonight isn’t as busy…

And the Powerball Numbers Are:
Ok, I lied yesterday.   My numbers didn’t go down, but ticked back up.  Apparently that’s the steroids.  The counts will go down.  I’ve been promised that.

WBC- 2.8
Hemoglobin- 11
Platelets- 104

And while we are correcting misinformation, I received a copy of my preliminary bone marrow biopsy report.  The blast level in my marrow was actually 63% and my peripheral blood had 2% blasts.  I’ve been told the numbers don’t actually matter too much and my prognosis is still the same.

A Duck Dynasty Prayer
Father God, take me into your arms tonight.  Help me to sleep.  Help me to rest.  Help my body to fight and for the chemo to work.  Thank you for the hands that support me.  For the prayers that are lifted up.  Thank you for those that take care of me and for those who take care of them.  May your name be recognized in all of this.  I thank you for another day.

Three Chemos Today
I received 3 different chemos today.  The last of my Cytoxan.  The only dose of Adriamycin and the first of 2 doses of Vincristine.  I don’t get the 2nd dose of Vincristine for a week.  It’s kinda like the clean up chemo.  They put it in to catch any leukemia cells that might have survived the first few doses of other chemos.

I Pee A LOT
While in the hospital, I drink a lot of water.  And I have 125 mL/hr of normal saline getting pumped into me.  And I have chemo getting pumped into me.  All that liquid has to go somewhere, and it’s main exit is out my penis.  I’m a guy who likes to pee.  You can pee normal, or you can have fun with it.  You can stand at the toilet and see how far you can walk back before you need to walk forward.  You can find a private balcony and aim for some flowers or you can just drop trou and color circles in the grass.  It’s man’s God given right to pee how he wants, but unfortunately the hospital has rules that apparently trump God’s.  In the hospital, you have to keep track of I’s and O’s.  Basically the liquid that goes in and the liquid that comes out.  I can no longer pee with free will, but must plop said penis into a plastic urinal and place my pee in this predefined container.  They then measure how much I’m peeing to make sure what goes in is coming out.  It’s a bit restrictive and you only get 2 plastic jugs.  I learned last time around that you can’t fill them up all the way because some pee drains into the handle and then stays there.  They don’t change out these jugs so trapped pee in a container handle of a container that already contains pee isn’t the best smelling thing.  I long for the days of peeing freedom.  To be a man and pee how I want.  So when I get home if you see me standing on my kids play with my pants down, don’t be offended if I don’t wave back.  I’m probably just drawing some circles in the grass.

Footprints In the Sand
The more astute readers of reading rob will notice I’ve changed the banner on my caringbridge page to a picture of “Footprints in the Sand.’  Caringbridge has templates that are broken down by category so you can easily get a picture you like.  I find my pictures in the religion section, but there are sections for family, patriotism, babies, etc.  There’s also a section labeled “Adult”, but it’s not what I thought it was.

That Was When We Danced
I love the original poem of Footprints in the sand.  It’s definitely apropo for this journey I’m on.  There’s also a different version of he poem that I like even more.  You can check it out here: http://www.christinyou.net/pages/footprints.html.  I’m not saying my footprints are within God’s.  I have a long way to go on my faith journey.  But I do think Jesus is carrying me through this and I look forward to the time we can dance together to celebrate my earthly remission.

Don’t Use the F Word In Front of Your Nurse
About 3 minutes passed between the time I wrote that title and now.  If you guessed those 3 minutes passed because I had to get up and pee in a plastic urinal, thank you for paying attention.  So today I learned an important lesson.  Don’t say the F word in front of your nurse.  It’s not because your nurse doesn’t use the F word.  I imagine it’s used a lot.  It’s more because there are consequences to using the F word.  You see, Lindsey tells me that I tell the nurses and doctors too much detail sometimes  In my opinion, they ask me questions and I give them answers.  We covered the “I’m feeling Chemoey” yesterday.  Today my nurse asked me how I was feeling and if anything was going on.  That’s when I dropped it.  You know, the holy of holies.  The F-bomb.  I told my nurse I felt a Flutter in my heart.  Now uttering the word Flutter didn’t seem like a big deal to me.  My nurse casually looked at me and asked me a few questions.  Little did I know her wheels were turning.  It wasn’t but 5 minutes later that she returned with a tech and an EKG machine.  Apparently hospitals want these flutter things checked out.  I’m happy to report that my EKG was normal and the next time she came in and asked me if my heart had fluttered again, I simply said “No ma’am”.

And the Powerball Numbers Are
I don’t have ANC numbers today, but here are the rest.  It’s not that ANC is too low to report, it’s just that I had a paper copy of my complete labs yesterday, and today I only was told the following values:

WBC- 2.2
Hemoglobin- 10.2
Platelets- 82

And Down They Go
The chemo is obviously working.  My little blood cell buddies gave a valiant effort, but in the end the chemo was too much for them.  My numbers will continue to go down as the cells die in my peripheral blood.  My bone marrow is dying as well (although it won’t completely die until we wipe it for the SCT) so it can’t produce more cells to replenish the others.  The good news though is that the Leukemia cells are dying too.  DIE YOU SONS OF BITCHES DIE.

ALL Recap
For historical purposes and for those who are new reading Rob, let’s recap my situation.  I have Acute Lymphoblastic Leukemia.  Acute meaning it is aggressive and grows quickly (as opposed to Chronic Leukemia).  And Lymphoblastic meaning the leukemia is occurring in my lymphocytes (as opposed to my myelocytes).  While the cause of leukemia isn’t know, essentially at some point in my body a lymphocyte mutated.  This mutation grows rapidly and doesn’t dye off like a normal cell should.  It reproduces and reproduces and takes up so much space in my marrow that healthy cells can’t be produced.  Immature cells in my marrow are called blasts (it’s probably at this point I should apologize to any hematology people reading this.  This is most definitely a course level 101 overview, if that).  Normally blasts stay in the marrow as there is a membrane that only allows out mature cells.  Once blasts mature into white blood cells, red blood cells, etc they are let out of the marrow.

In the case of leukemia, there are so many cells crowded in the marrow that blasts start to escape into the peripheral blood supply.  Since fewer healthy cells are being produced and the existing healthy cells die off as they should, the blasts begin  comprise more and more of your blood.  Blasts don’t do anything useful.  Normal blood fights off infection, stops cuts from bleeding and carries oxygen to organs.  Blasts don’t do any of that, and when there are too many blasts and too few good cells is when people usually notice they have leukemia.

If any blasts are detected in the peripheral blood, it’s a bad thing.  There should never be any there and the critical blast value for a CBC is anything greater than 0.  My first time around I think my peripheral blood was around 28% blasts.  This time around the leukemia had just started coming back so there were very few blasts in my perhipheral blood.  My bone marrow is another story.  Usually the blood cells in your marrow are made up of less than 5% blasts.  My marrow had 25% blasts.  Note “had” being the key word because the chemo is killing those little sons of bitches as we speak.

Prayer Space For Rent
Still no takers on the prayer sponsorship.  Maybe that will come a bit later.  While we are on sponsorships though, I do want to say a big thank you to Laura Beagle Smith for setting up a gofundme.com page for us.  At some point I’ll talk through all the ways people can help us through this journey, but I’m still waiting on a lot of info.  In the meantime I didn’t want to leave out the important contributions from those of you who have donated to us.  We promise to use the money wisely over the coming months.

I was Going to Meet Mickey
Actually, while we are on the topic of money, I feel compelled to be up front.  We had a trip planned to Disney in November.  It was going to be something else.  The kids love airplanes and we were going to fly down on “a big plane”.  We were also going to be going with Lindsey’s family.  And of course, the kids were really excited about meeting all the Disney characters.  The kids don’t know that we aren’t going yet, and I think Lindsey and I are a bit in denial, but I don’t see how I’ll be able to travel in November or do a week at Disney.  And saving for vacation isn’t a priority right now.

Now, don’t get too discouraged.  We will take this Disney trip at some point, it’s just been delayed.  We already bought the airfare and I was too cheap to buy travel insurance (oops) so we’ll just move the flights to another time.  I think the Disney trip is going to be our family celebration of my successful SCT.  We’ll need to use the vacation money we set aside for near term expenses but, Lord willing, we will make the trip.  The trip will be paid for out of earned wages once I’m back to work.  This turned into more of a sentimental story about celebrating a successful SCT at Disney, but my main point is to tell the generous gofundme contributors that your gifts will be used for medical and living expenses.  I don’t know when we’ll eventually make it to Disney, but don’t worry, I won’t use the donations to sleep in Cinderella’s castle.

A Duck Dynasty Prayer
Why change a classic anyway?  I guess we’ll stick with the Duck Dynasty prayer for now.

Dear God, this is about to get real.  The chemo is in, the counts are going down and I can feel my body changing.  I can feel the tiredness reaching up and grabbing hold of me.  I can feel the energy slipping away.  The chemo is winning and my body is failing.  But you will keep me strong oh Lord.  Your warriors will lift me up.  Prayers for healing and health will hold me strong.  Kill this cancer Father God.  Let this knowledge you have given my doctors be put to good use.  Let these healing hands you have given my nurses care for me in my time of need.  Father God, as I go to sleep tonight I know I will sleep more often.  I pray that I find the time for you.  That I make the time to read your word and I pray that we may have a great dance together as I dream.  Father God, most importantly, thank you for another day.

Almost There
I’m finishing up my 5th dose of Cytoxan as I type.  43.2 mL to go.  Tomorrow morning at 6a I will receive my last dose.  Then around 9:30a I will receive Adriamycin and Vincristine.  That my friends will thankfully just about wrap up Cycle 1A.  I’ll receive another dose of Vincristine on 6/14 as the final part of my Cycle 1A hyper-CVAD treatment.

I Feel Chemoey
During rounds this morning the doctor asked me how I felt.  I said I felt Chemoey and oddly enough she asked me to explain more.  Now you would think a lady who is spending all of her 20’s to concentrate in Hematology/Oncology would have learned somewhere along the way what feeling Chemoey means, but alas I had to explain it to her.

My current state of feeling chemoey is mostly related to the battle going on in my body between the Chemo (downers) and the Steroids (uppers).  My body wants to sleep for a long time but my mind is racing like a jack russell terrier.  My body says “Rob, let’s lay down”, but my mind says “Rob, let’s run some laps while doing jumping jacks and cart wheels.”  It’s not the worst thing in the world (which, if you don’t know is Eric Knight’s face) but it’s not the best thing either (Which is Jesus, closely followed by my wife).  The chemo causes me to be nauseous on an empty stomach but the steroids make me want to eat all the time.  That actually balances itself out pretty well, as I just jam some crackers in my mouth to shut up the steroids and calm down the chemo.  Overall, I just feel weird.  You know doc, Chemoey.

My Communion Habits
Our Church does communion on a weekly basis.  Communion is served on tables throughout the church.  The trays contain 2 containers stacked on top of eachother.  The bottom container holds the bread and the top container holds the juice (This info is very important as some people only grab the top container, ahem Pam Culross).  Anywho, when I get up to get communion, I’m also on the lookout for full cups of juice.  I can’t say exactly why I prefer full cups, but my OCD preference is two cups that are nearly full and of identical amounts.  This challenge is a bit harder than it sounds and there is a time crunch as well.  You have to be close enough to evaluate the communion cups, but you also have to be quick because there are people behind you.  Oh, and I always try to grab communion cups so that I don’t leave an odd number in a row.  That’s a lot to take in. For quite some time now, it seems like the communion team prefers half full cups.  It’s a bit disappointing to get a full serving of body, but only a half serving of blood.  I’m not sure why they are only filled half way.  Maybe it’s so you don’t spill or maybe an IUH exec is in charge of communion.

So what the heck does that have to do with cancer?  Not a whole lot really.  The only reason I thought of it is because of the mouth rinse I have to use.  When I was here before I would get a whole bottle of Peridex to use at my leisure.  I have to use Peridex because it kills bacteria in my mouth and regular toothpaste could cause abrasions where bacteria could collect.  These days at Simon Cancer you don’t get a bottle of Peridex all to yourself.  You get a small container 3 times a day that looks like, well a large communion cup.  Imagine my surprise when I opened my communion cup of Peridex and it was only half full.  Yep, there’s an IUH exec somewhere out there in charge of mouth rinse and communion.

Clocks of Assurance
If you Read Rob the last time around, you might remember Clocks of Assurance.  This was during the time of IUH’s Look of Assurance program.  Clocks of Assurance was my own personal endeavor because some of the clocks at Simon Cancer were wrong, and one of the wrong ones was in my room.  Believe it or not, but it took the persistence of a coworker who had a contact in maintenance to get the clock corrected (Thanks Jen-Sim!)

So this time around I’ve paid a bit of attention to the clocks.  We didn’t start off too great, as the consultation room they put me in after they told me I had relapsed was not correct.  The good news is the clock in my room is correct.  So our Clocks of Assurance program is 50% effective so far.  Batting .500 in baseball is pretty good, but if you are a condom manufacturer a 50% defect rate is not that great.

For a Friend
MOIST!

For Another Friend
While it is possible to donate stem cells to yourself, it is preferable in my circumstance to have someone else’s stem cells.  You may remember that another person’s stem cells will attack my cells and a certain amount of GVHD is good.  If they used my own stem cells, I would not experience GVHD and if I don’t experience GVHD then any leftover Leukemia cells might stick around (bad bad bad).  Interestingly enough, the only 100% guarantee of a stem cell match (aside from your own) is if you have an identical twin.  However, they would prefer not to use your identical twin’s stem cells for the exact same reason they don’t want to use your own.  You will not get GVHD if you use the stem cells of your identical twin.

Speaking of Consult Rooms
I really wish I had gotten a picture of this.  While sitting in the consult room (so Lindsey and I could have some privacy as we absorbed this bitch of a diagnosis), I observed a telephone.  I didn’t really think much of it, because it would be pretty common for someone to be in that room and need to make or receive a call.  However, I also noticed a piece of paper taped to the wall behind the phone that read “This phone is used for Dr. Guise’s patients.  Please let all calls go to voicemail.”  Excuse me?  The phone in the consultation room is one that patients call to leave a voicemail for a doctor?  That’s crazy!  The phone didn’t ring while we were there, but surely Dr. Guise and his patients deserve a better location for their phone calls.  I wonder what kind of HIPAA implications there would be if someone picked it up and pretended to be Dr. Guise’s secretary?

THANK YOU
Thank you to everyone who has prayed, sent a message, posted on facebook, shared a status, liked a picture, liked a caringbridge post, commented on a post, etc.  Your support and knowing you are out there mean the world to me.  I will be sure to acknowledge all comments and guest book entries by clicking the caringbridge button so you know I read them.  Also, if you click the caringbridge button (little heart with some waves coming out of the top) I can see your name and know you read the post.  It’s a small thing, but it’s nice to know people are out there.

A Duck Dynasty Prayer
Now that I’m 2.5 years wiser since my last stint with CaringBridge, I realize that this could be a sponsored space.  I don’t receive any royalties from Duck Dynasty, and like I said yesterday, I haven’t watched it in quite some time.  I’d be happy to rename my end of post prayer for the right sponsorship package.   Perhaps sometime in the future this will be the Proctor and Gamble Prayer or perhaps the Prudential Prayer or even the Pagano Prayer.  Are you reading this Chuck?

Father God, I’m tired and I’m wired.  I don’t know which way to go.  I know you hold me in your arms, and I just want to cuddle up and sleep.  Daddy, please be with me.  Please help me to keep a positive attitude day in and day out.  Please do not let me dwell on my circumstances, but instead help me dwell on my vision.  Your will be done, but I ask in your name for healing.  I ask to be rid of this cancer.  I ask for complete remission.  I ask for no more relapses.  I ask for a long life serving you.  All these things I ask in your name.  And I thank you for another day.