There isn’t too much to say about this week, and I suppose that is a good thing.  I worked from home and was able to work full days.  I felt pretty good after getting my blood transfusion of PRBCs (no wonder Lance Armstrong did it so often).  I was tired in the evenings, but went to bed early.  I had a little bit of nausea, but not letting my stomach get empty helps that.  Overall it was a good week.

To remove any doubt of my membership in the Bald Men of America club, I shaved my head.  I had some stubble, but it was a little patchy.  We are going to get family pictures taken, and I thought it looked a little funny.  One moment of impulsiveness later, and my head was shaved.  It’s kind of funny because I missed big chunks on the back of my head. I couldn’t find a mirror so I had to call Lindsey up to help.  She didn’t want to cut me, which I appreciate, so she didn’t push hard enough to get all the hair off.  She then had to guide my hand to get the remaining hairs.  Ah cancer, what memories you create.

I’ve been driving myself to appointments and blood draws.  The other week I noticed my peripheral vision has a blind spot.  I would turn my head to the right as I was changing lanes, and the back window was blocked out.  If I turned my head a little further so that I was more facing the back window, I could see just fine.  I did some un-scientific tests as I was driving where I would see how long I could see signs and other things out of the corner of my eye.  My peripheral vision seemed to be fine when I looked straight ahead, but when I turned my head and looked out of the corner of my eye, I had to turn it more than normal to see.

I’m not losing my peripheral vision, I’m only losing my mind.  I used to always wear contacts during the day and only wear my glasses at night before bed.  Now I wear my glasses all the time because it’s just easier.  As it turns out, when I was turning my head only partially to see out the back window it wasn’t my vision that was blacked out.  My eye was obstructed by the thicker part of my glasses frame, which made it look like the window was blacked out.  When I turned my head more, I was looking out my glasses lense, so the frame was no longer blocking my view.  I’ve since adjusted and now I tilt my head up a bit so the frame isn’t obstructing my view.  I’m really glad I’m not losing my vision, but I’m sure going to miss my mind.

Considering last Thursday as so low, I’m showing a good jump.

WBC – 3.7

Hemaglobin – 9.0

Platelet – 123

ANC – 3.0

Don’t look now, but some of these numbers are in the normal range.  Only my hemoglobin is abnormal.  That Neulasta stuff really works.

WBC – 6.7

Hemaglobin 8.9

Platelet – 431

ANC – 5.6

Lindsey and I are going on a date tonight!  I’ll add the Duck Dynasty prayer after we get back.

I’ve always marveled how things strangers have in common instantly bond them.  Perhaps it’s two people who discover they went to the same school.  Perhaps it’s two strangers cheering for the same sports team who end up sharing a beer.  For me, it has usually been faith that creates an instant connection with someone I have never met.  I can now add cancer to this as well.  It doesn’t matter who you are, if you have/had cancer we’re bonded for life.

Yesterday I was waiting to get my blood drawn.  A lady walked up and said “Can you please listen for my name, I’m going to grab some coffee.  I’m Jane.”  I said of course, and then instantly felt a bond with Jane.  I had no idea who she was or where she was from, but I imagine we were in that clinic because of a similar diagnosis.  Why yes Jane, I will listen for your name and do the best damn job listening for a name I have ever done.  The fact that you are here waiting for an appointment means you deserve no less.  I’ll probably never see Jane again, but she and I are both fighting cancer, and we’re all in this together.

To me that title sounds like a great action flick.  Perhaps back in the day Sylvester Stallone or Bruce Willis would have starred in this action packed feature with guns and mayhem.  It’s no action flick though. It’s a story about a guy with leukemia who has low platelet counts.  He’s always had bloody noses in the winter, but now with low platelets he tends to smell blood in the morning.  Thankfully it hasn’t resulted in many bloody noses but it is a little weird to wake up smelling blood.  Maybe this is how coke addicts feel in the morning too.  Perhaps I could use “I smell blood in the morning” as the title of this book I’m supposed to be writing.  That title would look really good in the inspirational section.

I’m assuming I don’t have any young readers here who will go ask mom and dad what “hell” means.  I know for a fact I’ve heard the word in church, so it can’t be all that bad.  But that has nothing to do with this topic.

I’m getting use to my cancer body.  It’s not necessarily a top model body, but then again it never was.  When I see myself in my bathroom mirror, it’s no longer a surprise.  Sometimes I’d wrinkle my nose or stick my tongue out just to see the guy in front of me do the same thing.  Yep, that’s me.  It’s a little weird to see a half shaved chest, a scar, and bruising where my port is, but I’m getting used to that too.

Being out and about is a different story though.  I’ve gone to a few stores and literally stared at a guy down the aisle only to realize it’s a mirror and that guy is me.  Then I’ll dothe same thing in a different part of the same store.  Who the hell was that bald guy and why is he following me?

I was a bit surprised because IU Health always seems to take their own sweet time in sending an inaccurate bill to us.  However this time I believe we received an accurate bill and it was within a few weeks of my discharge.  The good news is that my total care only cost $0.99. The bad news is that you have to move the decimal 5 places to the right to get the actual bill.  Really, I think $99,000 is a bargain for 3.5 weeks in the hospital.  Never you fear though, that’s the list prices and inevitably we’ll get a statement from our insurance with what is actually being paid.  Thankfully I have a decent out of pocket maximum for 2012.

Thursday was lab draw day.  It was also lay down in the afternoon because I was so exhausted day.  The numbers will tell you why.

WBC – 0.2

Hemoglobin – 6.9

Platelets – 12

ANC – Gone Fishin’

All those numbers are as low as they were at one point in the hospital.  I was definitely tired yesterday, but was still able to function.  Today I got a transfusion.

Today I went to University Hospital at Indiana University Health to receive 2 units of blood and some platelets.  They couldn’t give me the blood until some testing was done, so we started with the platelets.  I informed the nurse that I had reacted before so she gave me my typical pre-meds of Tylenol and benadryl.  Usually the benadryl is pill form, but this time she gave me 25mg IV push.  The platelets went in without incident, and I didn’t have any itching (that was how I reacted before).  Considering the transfusion a success, I went back to working on my iPad.

A few minutes later I noticed some red dots on my hand.  They didn’t itch.  I’ve been having issues with dry skin and reacting to soap, so I sat there an wondered if something in the hospital soap had made them flair up.  It was then that I noticed the dots on my arm too.  It seems a few more appeared before my very eyes.  I called the nurse over and she pushed another 25mg of benadryl.  We waited and we watched.

It was quite the interesting thing to see.  The little red dots popped up more and more.  All up and down my arm and all over my chest.  The dots would pop up, they’d puff up, and then they’d close ranks so all you could see is red puffy skin.  Throughout the whole thing it never itched, it just looked bad.  They gave up on the benadryl and pushed some hydrocortisone.  Thankfully that worked, because if it hadn’t the next step was to have a doc come evaluate me.  Slowly but surely the puffy red went away and my supple silky skin returned.

So now that I’ve had yet another reaction to platelets, the nurse advised that they’ll just pre-med me with an IV steroid next time.  Hopefully that works for the long haul.  The packed red blood cells went in with no issue.

A very great man and boss passed away last Sunday.  Today was the ceremony to celebrate his life. I  was worried I wasn’t going to make it.  First because I thought I’d be too tired, but also because the transfusion wouldn’t finish in time.  Thankfully my new PRBC’s gave me an energy boost and I was able to make it to the church for the reception.

Everyone there was someone I work with and most were people I hadn’t seen in 2 months.  It was great to see everyone!  Everyone knew they couldn’t hug me or get too close to me.  After awhile, it felt like I was an animal on exhibit at the zoo.  Not like one of those jungle cat displays where there is a tall wall or big pit.  More like one of those indoor displays where there is just a railing and you can almost reach out and touch the animal.  There was a wall of people in front of me, and a very defined separation between us.  It was like there was an imaginary railing right there that they all leaned up against to get a good look at the bald animal with the surgical mask on.  I even joked that there would be an imaginary sign that said “Don’t feed the Rob.”  It was good to see everyone and celebrate the life of Tim.  He is terribly missed.

Father God I am in your arms tonight.  Like a little boy being carried by his Father, you carry me.  You lift me up when I am week.  You lay me down to rest and watch over me.  You hold me close and keep me safe.  With you O God for me, I do not fear this disease that tries to be against me.  Your Angel Armies are on my side, and I close my eyes tonight knowing you keep me safe.  Thank you for another day.  Amen.

I guess I’m still getting used to the new me.  I haven’t had anything but stubble on my head for weeks now, yet I found myself still using shampoo.  The other night it finally dawned on me that I wasn’t really shampooing anything of consequence.  Seeing as I’ve never really been bald before, I’m not sure of the protocol.  For now I’m just soaping up my wash cloth and cleaning my head that way.  Maybe I’ll see if there’s some head soap or something I’m supposed to be using.

I started working from home again this week.  I was a little worried, because even on Sunday I was needing a nap to make it through the day.  Well lo and behold, I’ve worked more than 8 hours each day this week.  I felt a little worn out this morning, but that went away.  It got to the point where Lindsey was asking “aren’t you done with work yet.”  I realize that I’m not as fast as I used to be.  Sometimes I’ll have to reread something 2 or 3 times for it to sink in.  Sometimes I’ll forget what I’m doing even though I’m in the middle of it and it’s right on the screen in front of me.  But it’s good to be doing something with my day and it’s great to be in contact with my coworkers.  It’s not like being in the office, but then again the toilet paper is a lot nicer here and I can drink real coke if I want to.

Lindsey and I were able to take a little date night on Sunday.  Who knows when the last time was that we were able to go out.  I do know that it hasn’t happened since December 6th.  We went out to eat at O’Charleys and then went to Target.  Normally we would divide and conquer when going to the store, but I wasn’t allowed to touch things since they have germs.  I was able to walk with Lindsey for the most part, but in the end I stood in one part of the store while she got the last few things on the list.  Once we checked out, we headed home.  I definitely needed a nap.

WBC – 2.6

Hemoglobin – 8.8

Platelets – 59

ANC – 2.3

My little neutrophils seem to be hanging in there.  However the rest of my white blood cells are in the crapper.  I go back in on Thursday for another draw.  I would expect all the numbers to be lower. This morning it sure felt like they were lower.

12:30 would be when I got up to go pee.  2:30 would be when Sydney woke up crying and I had to go comfort her.  That’s a much more normal schedule for me at night.  Granted, I did end up peeing at 2:30, but it was more a matter of convenience since I was already up.

My medications aren’t that complicated.  I have 3 pills that I take twice a day and one pill I take in the morning.  Still it was getting to be a pain to open up all those pill bottles, get out the right amount (some have to be half pills), and then not drop anything on the floor.  I broke down and bought some of those old people boxes.  You know, the ones that have the day of the week on them so you can organize your pills.  I’ve got two boxes, one for days and one for nights.

The whole leukemia thing takes a bit to explain to people, and sometimes it’s not worth it.  It’s similar to telling people about the girls being conceived via IVF.  A lot of people ask us if twins run in the family.  Usually I’m up front with people and tell them we did fertility treatments.  Other times it’s just not worth the effort and conversation, so I simply say “why yes, twins do run in the family.”

Similarly, you can’t really say “sorry I’m out of the office receiving treatments for leukemia.” as sometimes that will lead to longer conversations than I may have the energy to have. So sometimes I just go with a simply “sorry, I can’t make it due to illness.”  Of course then “illness” just sounds like I have the flu.  Today I received a very nice response that said “I’m sorry you aren’t feeling well and can’t participate.  I hope you are better soon and we look forward to seeing you in the next class.”  Ya, me too.

Father God, I kind of feel like a whack-a-mole at times.  I feel better and pop back up, then a mallet knocks me back down.  But even in the down times you are there, and I’m thankful for that.  Even in the times where I’m not faithful, you are and I’m thankful for that.  Even in the times when I’m too occupied for you, you are there and I’m thankful for that.  Even in the times where I feel good and don’t praise you, you are there and I’m thankful for that.  I know that I am not a perfect child, but I am thankful that you are a perfect God.  Thank you for another day.  Amen.