Maintenance Mode

There are 3 phases to Leukemia treatment:

1) Induction (to achieve remission), which I went through in December of 2012.
2) Consolidation (to kill off any hidden cancer cells), which lasted from January 2013 – July 2013.
3) Maintenance (to maintain remission), which I started today.

What’s Been Going On?
I’m not really sure why I stopped writing for awhile.  Probably because everything I was going through was rather typical.  I saw Dr. Cripe, I got admitted, I got pumped full of chemo, I got discharged, I went home and felt crappy, I felt better, and then I’d start all over.  Lather, Rinse, Repeat.  That’s not to say there wasn’t some excitement.  Here’s two things that happened.

Where Were You in December?
When I was diagnosed in December, my primary care doc originally thought I had a kidney stone.  Much to my disappointment, it ended up being leukemia.  Fast forward to June and that kidney stone finally came.  I’m not sure what giving birth is like, but I’d much prefer to deliver my kidney stone via c-section.  It started out with a feeling that I just knew wasn’t good.  I had had some trouble urinating a few days before and thought it was either a stone or metastatic prostate cancer (ok, maybe a bit extreme but I didn’t expect to have leukemia either).  When I felt the pain start, I told Lindsey and she immediately began calling around to find someone for the girls.  Our good friends the Campbells were life savers and came over quickly.

Being a cancer patient I had morphine pills at home.  I thought I just pop a few to fend off the pain while heading to the hospital.  I popped a few, but I might as well have taken some tic tacs.  The pain came on quickly and was intense.  The morphine didn’t help.

Once we made it to the ER, I was sweating profusely and literally rolling around in my bed.  I kept trying to pee and couldn’t, so thinking something was blocked they inserted a catheter.  YEEEOWCH, that’s not a happy feeling.  I’m thinking about getting “do not enter” tattooed on my penis so that doesn’t happen again.  Unfortunately they didn’t get any urine out so the suspicion went from me having a blockage to me being dehydrated and in some sort of organ failure.

To add insult to injury, my potassium was 2.8, which is low.  So along with some IV fluids and some pain meds, they began infusing potassium as well.

At this point I finally caught a break.  The test to determine how quickly my organs were deteriorating came back normal.  The radiologist did indeed see a kidney stone.  The pain was controlled with Dilaudid, but it never went away.  I must say I’m disappointed.  Many people lie, cheat, and steal to get their hands on Dilaudid.  Apparently it makes people feel really good.  For me though, it only makes me sleepy (and takes away the pain).  Here I am getting pumped full of drugs (and I got a LOT of dilauded) and I don’t even get to enjoy one of the benefits.  Good thing I never wasted money on heroin.  That probably wouldn’t do anything for me either.

To make a short story long, I ended up getting admitted so they could monitor my heart and wait for the stone to pass.  The pain stopped the next morning and I was discharged in the evening.  Thankfully my primary care doc was the one on service, so he was there to take care of me.  Not wanting to miss a chance to give him a hard time I told him “Hey, here’s that kidney stone you promised me in December.”  And of course, he returned the bad joke favor by telling me he’d take care of me and leave no “stone” unturned.

Daddy Hot
I woke up on a Sunday a week after my 8th and final round of chemo to get the kids up.  As I got Sydney out of bed, she said “Daddy Hot”.  Well crap, this may not be good.  I hadn’t had any fevers since December, so why in the world would I get one in August?  I took my temperature and it was 100.9.  Well $#!+.  A fever is a one way ticket to being admitted.  Do not pass go, do not collect $200, just call us and we’ll get a bed ready.  I was in a bit of denial, so I took my temp every 15 minutes for the next hour or so.  100.9 100.9 100.9 100.9.  The temp was pretty consistent.  I called the on call doc, and of course I was told to go to the ER for evaluation and likely admission.

At the ER they drew my blood and had some surprising results.  My hemoglobin was 5.4, my ANC was 200 and my platelets were 4.  If you don’t remember, a normal hemoglobin is above 13.4 and normal platelets are 150-450.  As for the ANC, I wasn’t allowed to leave the hospital in December until it was at least 500.  All of my results were critical, and the hemoglobin and platelets were the lowest they had ever been.  I proceeded to get admitted and get blood products.  On the bright side, I had Dr. Azar as an attending.  He was the doctor who admitted me in December.  Of course my first question was “when can I go home?”  He responded by telling me that typically they would keep me until my immune system recovered, which would be 8-10 days.  Say what doc?  Here I thought I was all done with hospitalization and I was going to be couped up for over a week.  He said we could talk about other options once the cultures came back, but that would be a few days before they had results.

On the bright side it was good to see all the nurses again.  They kept me entertained and provided me with a plethora of broad spectrum IV antibiotics.  My fever never came back that day and I settled in for what I thought would be a long stay.

The next day I hit the jackpot.  My cultures were preliminary negative, my blood counts were on the way back up and I hadn’t had a fever in 36 hours.  Dr. Azar said my fever was most likely due to my low counts and not an infection.  He discharged me and I happily went home.  With any luck, I’ll stay out of the hospital for a long time to come and Dawn Ross will have to find a different ARRA guinea pig next year.

What’s Happening Now?
Let’s talk about what’s happening now.  No, not the show with Raj, Rerun, and Dwayne, but simply what’s going on in my life now.

Sorry, I Didn’t Recognize You
Today was my first follow up appointment since my IV chemo was completed.  Typically I show up to my appointments in street clothes since I get admitted.  Today I showed up in a shirt and tie because I was working.  Dr. Cripe walked right past me and didn’t say hello (he’s typically very good at recognizing patients).  Once he saw me in the exam room he apologized, as he said he saw me but didn’t recognize me all dressed up.  Perhaps it’s also because I have a little bit of fuzz on my head again.

Hey, Hair!
Speaking of a little bit of fuzz, my hair is starting to grow again.  I actually have to shave a few times a week now.  I must admit, it is a bit strange to see hair growing on my body.  It’s kind of like being 12 all over again.

Back To the Visit With Dr. Cripe
I filled Dr. Cripe in on what had been going on and he then explained to me what will happen in the maintenance phase.  I will take 2 drugs.  The first is mercaptopurine, of which I will take 50mg each day.  The 2nd is methotrexate, of which I will take 25mg once a week.  In typically cancer fashion, the methotrexate only comes in 2.5mg pills, which means I get to take 10 of the bad boys at 1 time.

Side Effects
The side effects should be pretty minimal.  He said I shouldn’t experience any side effects from the mercaptopurine.  The methotrexate however is a bit more nasty.  I could potentially feel fatigued after taking it and well as feel nauseous.  Granted, I tolerated methotrexate pretty well when I received it IV.  And the dose I’ll take orally is about 1/50th of what I got in the hospital.  Hopefully I can make it through without any issues.

Make Mine a Virgin
Methotrexate is also hard on the liver.  Because of this, I’m not allowed to have alcohol at all when I’m taking it.  I’m not a big drinker to begin with, but it seems to be human nature that when someone tells you you can’t do something, you want to do it even more.  I could really use a Margarita right now.

My Next Drink
It’s going to be awhile before my next drink.  Maintenance therapy lasts until you reach the 2 year post diagnosis mark.  For me that means I’ll be able to drink again in December of 2014.  That might be one hell of a Christmas.

The Next 16 Months
So until December 2014 I’ll take mercaptopurine on a daily basis and methotrexate on a weekly basis.  I might lick the outside of a beer bottle, but I won’t be able to partake of it’s contents.  I’ll see Dr. Cripe on a monthly basis and get my labs drawn when I see him.  They’ll check my blood counts, liver function, and kidney function and adjust my doses as necessary.

And the Powerball Is
Hemoglobin – 13.9!
WBC- 5.8
Platelets- 139

My platelets are the only thing below normal now.  And while they are below normal for a normal person, the are perfectly fine for me.  Dr. Cripe said my counts were looking good.

Thanks Again!
Thank you to everyone who has supported me, prayed for me, and helped me through this journey.  It’s not over yet, but because of you I’m well along on the path to recovery.  The next milestone is December of 2014.  When I make it through the maintenance phase without relapse, there is a very high percentage chance that my leukemia will not return.  In December 2017, I will be considered cured.  Don’t forget about that party we are having 😉

If You Have a Moment
Hop on over to  This is a CaringBridge page for my brother-in-law who recently found out he has a tumor on his pituitary gland.  He could use your prayers and support as well.

A Duck Dynasty Prayer
Thank you God for getting me this far.  Thank you for each day further I go.  Thank you for my time with family, especially my wife and kids.  Thank you for the ability to work and for the roof over my head.  Thank you for the advancements in medical care that allowed me to live instead of facing certain death.  Thank you for each moment I have.  Thank you for another day.  Amen.

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