Quality Time with Dr. N 
Monday was my normal appointment with Dr. Nelson.  My creatinine is now 1.37, so it’s back in the normal range.  Since my kidneys are happy again, we’ve increased by Tacrolimus dose to 2mg a day.  When I first started, I was taking 6 mg of tacro, so this is still well below my initial dose.  At this point we are trying to maintain the lower therapeutic range for the drug.  I need to stay at a therapeutic level so I don’t get full blown GVH, but we are staying at the lower end to increase the chances of Graft vs. Leukemia.  I’m back to weekly visits, so my next visit will be Monday 12/14.

It Was Inevitable
With 3 young kids in the house, 2 of which attend pre-school, it was only a matter of time before one became sick.  Of course when one gets it, they all get it.  So really it was only a matter of time before all 3 became ill.  Everyone has been snotting and sneezing for a few days now.  Sydney had a low fever over the weekend.  And me?  I have something, but I’m doing my best to fend it off.  Dr. Nelson said we need to keep a close eye on it because it could escalate quickly.  However, besides a runny nose and one temp of 99.7, I’ve been doing pretty good.  I’m a little more run down than normal, but I’ll take run down over intubated in the ICU.  Dr. Nelson said my lymphocytes are in a good stage to help fight this off, so I have that going for me.  He gave a complex reason for that that I don’t quite recall.  I really should write some of what he says down, but he uses big words.

The Stem Cell Transplant Diet
I can’t in good faith recommend the stem cell transplant diet to you, but it’s hard to argue with the results.  For all the rounds of chemo I had, my weight never changed much.  Right now however I’m down around 30 pounds from my pre-transplant weight.  I’m hovering just above 200.  I’m kinda hoping to dip below 200 just for the fun of it, but I’m also eating a little better so we’ll see what happens.  The Stem Cell Transplant diet involves small portions and no pop, so I guess you could probably try it after all.  It’s not that I don’t want pop, because I do.  But my stomach can’t handle it right now and after not drinking it for 2 months it tastes too sweet anyway.

Lindsey’s Gonna Ride My @$$
So now that I’m feeling a bit better, Lindsey’s going to be getting me on the treadmill.  The threats haven’t started yet, but I guess that’s because she’s in the Christmas mood.  I need to build up my lung capacity and stamina in general, so walking on the treadmill will be something good to do.  Heck, maybe I’ll even run.  Back in the day I ran a few 5Ks.  Well, maybe they were 10Ks, I can’t remember.  Aw, heck you weren’t there.  I ran marathons back in the day.  Lots of them.  I may not become a runner again, but I see plenty of walking in my future.

It’s Beginning to Look a Lot Like Christmas 
This year we have an artificial tree.  Lindsey has had this tree for longer than she’s known me.  It’s actually this very tree that helped let her know I wanted to spend the rest of my life with her.  When we were dating I looked at this artificial tree and declared “I want us to have real Christmas trees each year.”  Of course that implied we’d be together for each year and ever since then we have been.  Real tree and all.  This year though it’s just easier to put the artificial tree up.  The kids like it all the same and technically I’m supposed to stay away from plant life.  Chance of fungi or something like that.  Along with the tree, we like to hang up Christmas cards.  Let me admit for a moment that getting the mail is one of the highlights of my day (there ain’t much going on).  So even if we haven’t been on your Christmas card list in years’ past, if you find yourself with an extra one, send it our way.  It’s a nice pick me up to get some mail, especially Christmas cards!  Rob and Lindsey Culross, 6650 Silverthorne Way, Indianapolis, IN 46259.

A Duck Dynasty Prayer
Father God, I thank you for health and happiness.  I mean, having cancer isn’t exactly the blueprint for health and happiness, but each day is what we make of it.  Thank you for helping me make each day as good as it can be.  Let me delight in the good days and help me through the days that aren’t as good as I would like.  Thank you for my family and all their support.  Thank you for another day.

Making Progress 
I’d like to try an update weekly, along with my visits with Dr. Nelson, but at the very least I’ll try and update fortnightly.  I had my typical visit with Dr. Nelson on Monday.  That was a little more than 6 weeks after my transplant.  My creatinine has come down to 1.4.  Still slightly above normal, but much better than the 4.4 it was.  He advised that there was nothing different I should be doing and I’m on track for where he wants me at this point in my recovery.  I go in for more labs tomorrow, just to check blood counts and the levels of the drugs I’m taking.

GVH, is That You?
I still haven’t had any concrete signs of GVH.  That’s good in the sense that I haven’t had those side effects.  Bad in the sense that I want a little GVH so my new cells have a chance to kill any remaining leukemia cells.  Granted, I’ve had some symptoms of GVH, but not really enough to call it GVH.  I’ll spare you the details, but there are times when I go through an awful lot of toilet paper.

Healing vs Hoping
Cancer is an interesting beast.  I feel good.  There is no sign of disease in my body, yet at times it lingers in the back of my mind.  It’s not like, say, a broken bone.  A broken bone you can watch heal.  You can take x-rays.  See the fracture.  Then take more x-rays and see the healing of the bone.  You know once it’s healed that it is practically as good as new.  It may break again if you put yourself in circumstances to cause the break, but it’s not like you’ll just be driving down the road and your arm will break again.

Contrast that with Cancer.  You won’t know when it’s back.  You won’t feel it growing inside of you.  But the cancer fire may very well spark again while you’re driving unsuspectingly down the road.  One mutated cell divides and becomes two.  Two divide and become four.  The process continues until finally you notice.

I don’t know that you ever “heal” from cancer.  That’s not to say that I won’t go on with life.  From my first experience with remission, I’m sure I won’t think of cancer on a daily basis.  I’ll get wrapped up in living life to its fullest.  But there will always be that bruise.  That bloody nose.  That pain in my bones that will make me wonder.   No, you never heal from cancer but you hope to never have to deal with it again.

And the Powerball Numbers Are:
I’ve gotten a little behind on sharing my CBC numbers.  If you want to ride the roller coaster with me, they are below.  But don’t worry too much about them going up and down.  That’s normal, even if there is a little bit of mental torture when a number drops.

11/16/2015: WBC 3.6, Hemoglobin 11.3, Platelet 126
11/19/2015: WBC 2.7, Hemoglobin 10.2, Platelet 88
11/20/2015: WBC 2.7, Hemoglobin 10.0, Platelet 96
11/23/2015: WBC 3.4, Hemoglobin 10.3, Platelet 95
11/25/2015: WBC 3.3, Hemoglobin 9.6, Platelet 99
11/30/2015: WBC 3.2, Hemoglobin 9.0, Platelets 101

That’s About It
There isn’t much else going on, which I suppose is a good thing.  It’s easy to write when there are new medical updates or things I need to think through.  Right now I’m just walking the road to recovery one step at a time.  I’m taking naps when I need to.  Pushing myself when I can.  And yes, I’m showering and brushing my teeth a bit more regularly.  I’m also taking an online programming class to try and keep my mind challenged.  I may not make all the deadlines, but it’s nice because I can work at my own pace.

A Duck Dynasty Prayer
God there is hope.  There is hope in you.  There is also healing.  You alone can heal me.  You alone know my future.  I may not know if this cancer will every return, but you already know.  I may wonder but may I never wander from you.  Thank you for another day.

I Think I’m Out of the Top 5% 
Last week I was bragging about only being in clinic for one day.  This week I’ll brag about being in clinic 4 out of 5 days.  I’m actually not too sure why I wasn’t in clinic on the 5th day.  While Dr. Nelson didn’t say this specifically, I think I’ve fallen out of the top 5%.

Monday
Monday started out like any other clinic visit.  Well actually it didn’t.  Monday represented the first day I drove myself to clinic.  Usually I catch a ride with Lindsey or a “neighbor”.  However this Monday I felt well enough to drive and wanted to experience some freedom.  Yeah me!  Once in clinic, they took my vitals and drew my blood as usual.  After a short wait, Dr. Nelson came in to see me and said things were looking good.  My platelets were down a bit, but my WBC and Hemoglobin were up.  All my counts looked good, we just needed to see my CMP, which wasn’t back yet.

Ah, my CMP.  The harbinger of bad news.  Dr. Nelson came back to my room and told me I wasn’t drinking enough.  Actually I was drinking the recommended amount of water, so what was going on.  My Creatinine was 4.45.  Normal is 0.8-1.3.  Some people require dialysis starting around 5 or 6.  Dr. Nelson said 4.45 was actually enough to admit me, but thankfully we didn’t go down that route.

The Cause
My immuno-suppressants can be hard on my kidneys and that is what was happening here.  Dr. Nelson had a very well thought out, medical and technical explanation of what was going on.  I’ll just say my kidneys were unhappy.  I received a liter of fluid to help flush things out.  I was also told to stop my immuno-suppressants and come back on Tuesday.

Tuesday
On Tuesday it was the exact same drill, except I saw the Nurse Practioner.  I should mention that Dr. Nelson was supposed to be on vacation this week, but he came in on Monday to see a few patients and he gave instructions to be called with my results.  He is definitely very involved in my care and I appreciate it.  The CMP came back but unfortunately the Creatinine didn’t come down by much.  It was 4.25.  So another liter of fluid and more meds to stop.  This time I stopped the Acyclovir (anti viral) and went down to 1/4 of my normal flucanozole (anti fungal) dose.  For some reason I got Wednesday off, but had an appointment for Thursday.

Thursday
As you might guess, I got a liter of fluids on Thursday.  My Creatinine had come down, but not quite enough.  It was 2.95.  The nurse practitioner again called Dr. Nelson and he instructed that I start back on my immuno-suppressants but at a smaller dose.  This is necessary because the immuno-suppressants keep me from having full blown GVH (Graph vs. Host disease).  We will eventually wean me off the immuno-suppresants, but that is supposed to happen much later.  I am to alternate between the 2 drugs I take, so I’ll take the tacro on one day and the siro on the other.  Also my tacro was reduced from 6mg to 1mg.

Now with the creatinine trending in the right direction, I ran into another problem.  The NP said it was perfectly normal, but to me dropping counts are never a good thing.  My WBC was down from 3.6 to 2.7.  My hemoglobin from 11.2 to 10.3 and my platelets from 127 to 88.  88!  When I relapsed they were 104.  I told myself the NP said it was ok, so I didn’t worry to much about it.  Afterall, there were no blasts in my blood and I think there would have been some if my bone marrow really was failing again.  I left clinic with an appointment to see Dr. Nelson on Friday (again on his time off).

Friday
Dr. Nelson spent a lot of time with me as I had a lot of questions.  He reassured me about my counts and let me know that everyone goes through a “lull”.  He also specifically said not to worry about the result as he needs me to maintain a positive attitude and he’ll always let me know if there is something to worry about.  He showed me my results one by one and explained my BUN, Creatinine, CRCL and GFR.  It was really quite educational.  My creatinine was down to 2.45, but I again received 1 liter of fluids.  I also got 4 mg of Magnesium, as that was running low and has been on and off since transplant.  After 3 hours of infusions, I was heading out the door for the weekend.  Of course they reminded me they are open on the weekend, so I could always come back.  No thanks, I think I’ll stay away until my appointment on Monday.

My Blip
So there you have it.  My little “blip”on the radar.  Probably one of many that will occur as recovery takes months.  The plan is to slowly increase my meds again and find a happy balance between the meds I need and keeping my kidneys happy.  All the while avoiding dialysis and admission.

Everything Else
Other than the above, it’s been a good week.  I still have nausea, but I can tell my stomach is getting better.  I still take naps, but can tell I’m getting more energy.  The problem being my immune system is still weak, so even as I feel better, I can’t really go out and do anything.  To do so would be risking getting a virus and in Dr. Nelson’s words, “You’d probably survive it, but you’d definitely be admitted and you would be in a lot of pain.”  So with that in mind, I’m staying inside.

Shhhh, Don’t Tell Lindsey
As I start to feel better, my hygiene habits are improving, but overall it’s hard to find motivation to do even little things.  I’m lucky enough to wear pajama pants 24/7 (unless I’m going to clinic) and showering is no longer a daily thing.  Heck, even tooth brushing isn’t a daily thing.  I would simply say I’m not motivated, but then someone will comment that they aren’t motivated too.  Let me tell you, this is completely different.  This is something you wouldn’t understand if you had not gone through it.  It’s both mental and physical like the task you have to undertake will be the hardest thing you have to do in your life.  Heck, sometimes I have to talk myself into getting off the couch to go to the bathroom.  Again, it’s a different kind of feeling.  A totally worn out, haven’t felt good endorphins in weeks, what’s the difference really, kind of feeling.  Even having dealt with depression in life, I haven’t felt something like this before.

A Duck Dynasty Prayer
Father God, thank you for strength.  Thank you for food starting to taste normal.  Thank you for the ability to go up and down stairs.  Thank you for naps and all the little things I’m provided with.  Thank you for a rock solid smoking hot wife who somehow handles the weight of the world on her shoulders and keeps everything running.  Thank you for moms, mother in laws, and step mothers who check in and help out.  Thank you for all you’ve blessed me with, as those are the things that I want to concentrate on.  Thank you for another day.