Well, I got my 1/100th of a bump in my ICD-9 code.  I’m now a 204.01.  Yes folks, I’m officially in remission 😉  The road is still long.  I still have 5 more treatments and it will be 5 years until I’m officially considered cured.  However, this is another very important step in the journey.  Thank you for all your prayers and support!

Ever since Lindsey’s first admission at IUH North, I’ve read every word on the every hospital menu I’ve seen.  Why?  Well because when there isn’t much to do and you’re bored enough, a menu reads like a great novel.  When Lindsey delivered the girls at IUH North in the summer of 2011, the only error I found was that the menu was for “Clarian North.”  Of course the name “Clarian” was dropped in January 2011, so the menu was a bit out of date.  Granted “assurance” wasn’t in the corporate vocabulary at the time, so I’ll let that one slide.

Fast forward to today, and my current menu is a bit jacked up.  First off, what is normally a tri-fold menu has been cut up with a paper cutter so that a 1/3 of it is now stuffed in the other 2/3’s like an insert.  The problem being that the 1/3 that is cut off had to be trimmed a bit more and some of the food choices are cut off as well.  But that isn’t the funniest thing to me.  The funniest thing is that the menu specifically says “Lunch/Dinner begin at 11pm and are served for the remainder of the day.”  So there you have it folks.  You’re allowed to get lunch/dinner for 1 hour out of the day.  Guess there are a lot of omelets in my future.

I made it through the bone marrow aspiration.  Lindsey stayed in the waiting room.  Something about metal grinding on bone makes her queasy.  The good news is that this one didn’t hurt quite as bad as my last one.  The bad news being that they didn’t get a good sample the first time, so they had to do it twice.

I’ve never seen the bone marrow aspiration done, because it all happens behind me, but here’s what I think happens.  Basically they have a cart of fun needles, similar to what you might find in an Iraqi torture room.  You get a shot of lidocaine to numb up the top layer of skin, which comes with the normal needle prick and burning sensation.  You then get another shot of lidocaine closer to the bone with another prick and burning sensation.  Next the aspiration needle goes in.  This is where more of the pain starts.  They press the needle onto the back of your hip bone and then begin turning it to drill through your bone.  Picture yourself with a screwdriver and bearing your weight down while you try and screw something in.  That’s basically what it is like.  There’s a lot of pressure on your bone and a general sense of pain, because you know someone’s pushing hard on you and drilling into your bone.

Once they’ve drilled far enough, they have to get a chip of the bone marrow.  They count down from 3, you take a deep breath and hold it,  and then chip off a piece of the bone marrow.  Simultaneously a pain, similar to a really  bad charlie horse, shoots down you entire leg.  Like I said, they didn’t get a good chip on the first try, so they had to back the needle out a little bit and re-drill (ie, more pressure pain and a 2nd charlie horse sensation for Rob).  I could tell he got a good sample on the 2nd try cuz it hurt like a mofo.  The first try only hurt like a son of a gun.

After the sample has been collected, all there is left to do is back out the needle by pulling it back.  Then another countdown and a slight popping noise as they pull the needle from your bone.  You then have to lie on your back for a few minutes so the bleeding will stop.  That concludes your bone marrow aspiration…well except for the lingering pain in your hip the rest of the day.

Even though my bone marrow aspiration occurred in the morning, they didn’t think they’d have the results until tomorrow.  So I get to spend one more day as a 204.00.  I just need one little 1/100th to add to my ICD-9 code.  It will make all the difference in the world.

They were happy with my numbers.

Hemoglobin – 12.1

Platelets – 187

WBC – 4.0

ANC – 2.8

I asked about my WBC dropping.  Basically it is due to the effects of the Neulasta wearing off.  They time the Neulasta injection so that its effectiveness is peaking at the same time the effects of the chemo have wiped out all my cells.  That way the Neulasta gives me a quick boost and helps prevent infection.  As long as my WBC doesn’t crash again, they consider it a success.

The Hem/Onc unit is broken up into 3 pods.  A pod, B pod, and C pod.  I’ve now completed the trifecta.  My first stint was in A7.  Last time I was in B11 and now I’m in C 25.  All rooms face the outdoors, but the upside of A&B is that they look over Michigan and University streets.  You get to see students walking around campus amongst other things.  C pod however overlooks the hospital roof and faces another part of the hospital.  So while you do get sunlight, you also get to stare at a grey exterior wall along with some office windows.  Maybe I’ll grab a bar of soap and draw SOS on my window to see how long it takes someone in one of those offices to make sure I’m ok.

During my first admission when I was in A pod, I got bored one night when I couldn’t go to sleep.  The steroids were keeping me up and it was like 1 in the morning. I can control some lights from my hospital bed and I started to turn the lights on and off to form the Morse code for SOS.  I did that for a few minutes until I realized someone driving or walking by may in fact take my boredom SOS for a real SOS and call in to the hospital.  Since I don’t know the Morse code for “I’m bored and this is a joke”, I decided to just stop.

Father God, thank you for routine.  Thank you for the known routine of treatment.  Thank you for a talented medical staff and a caring one as well.  Help me to get through this treatment and the days that follow.  Help me to once again avoid the worst of the side effects.  Be with my family as I am away.  Let me return to them one step closer to being cured.  Thank you for the wisdom you provide everyone here.  Thank you for another day.  Amen.

I’m not sure what made me think of this comparison, but I’m remembering back to when I lived in California and they would fumigate houses to kill termites.  On the first day you’d see a tent go up over a house.  Then they’d pump in gas that seeped into every nook and cranny and killed all living things, including the termites.  Once a few days had passed and the gas had dissipated, they’d take down the tent and the occupants would move back in.

Similarly, when I arrive at the hospital they’ll put me in a gown and then pump in some chemo.  The chemo will seep into every nook and cranny of my blood stream, killing almost all living blood cells.  Once the chemo has dissipated, my blood cells will come out of my bone marrow and move back into my bloodstream.  Basically I’m getting fumigated this week.

Tomorrow it’s quite possible that I will be in remission for the first time in my life.  I never thought I would have cancer in the first place (if I had, I would have given the Aflac duck a call well in advance) and I’ll be happy to be rid of it.  May this be my first and only time where I need to go into remission.

On Friday I packed up my office for the second time.  This time I at least know a general time frame of when I’ll be able to come back.  It was good to be at work for two short weeks and it will be frustrating to be away again.  Just as I got back up to speed on things, I have to stop for treatments.

For the third time in as many months I picked up each of my children as they slept and said goodbye.  I told them how daddy didn’t want to leave them, but he has to leave for these few days to make sure he gets better and has many more days with them.  I told them how much I loved them and how much I want to see them grow up.  I let them know that I am always with them and that I love them no matter where I am.  Daddy will get better.  I promise.

There’s a number printed on all my paperwork.  It’s 204.00.  For those of you that don’t know, that’s an ICD-9 code.  In the medical field, ICD-9 codes are used to classify medical issues into 5 digits for billing purposes.  204.00 stands for “Acute Lymphoblastic Leukemia without mention of having achieved remission.”  When I’m discharged this time, I’m really hoping to be upgraded to a 204.01.  That would be “Acute Lymphoblastic Leukemia in Remission.”  204.01 is where I want to stop though.  The only other code is 204.02 and that is “Acute Lymphoblastic Leukemia in relapse.”  Here’s to a lifetime of 204.01’s and no 204.02’s.

I’ve often thought that ICD-9 codes would be a perfect way to insult someone without them knowing.  There’s certain things you can’t say to people, but nobody expects a string of numbers to be a bad thing.  For instance, if you had a coworker who always gave you trouble, you could very easily call them a 569.42 and they would have no idea that you just called them a pain in the butt (569.42 is the icd-9 for rectal pain).  Or perhaps there’s someone that won’t ever leave you alone, they just keep coming back again and again.  Just tell them they’re a bad case of 78.11 (genital warts).  Or maybe you know someone who can never make a decision in a tough situation.  Just tell them they really need to get a 62.7 (testicular prosthesis, aka “grow a pair”).  Go ahead, try it out on someone and see what happens.

Not to disappoint, but I don’t have my numbers with me.  This is from memory, so they may be slightly different.

Hemoglobin – 11.1

Platelets – 287

WBC – 4.8

ANC – 3.6

My WBC is trending down a bit, but I can’t really blame my white blood cells.  They’ll succumb to a fiery chemo death this week so I think a few of them were just getting a head start.

Father God, thank you for this time of healing.  Thank you for helping me feel better each and every day.  Please be with me as I get another round of chemo tomorrow.  As things become routine, help me to remember where I am and where I am going.  Don’t let me lose sight of the goal or lose sight of you.  Keep me strong and faithful.  Thank you for another day.  Amen.