Hoo Boy

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.

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.

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