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.

Home Life 
I’ve been home for over a week now and have settled into a routine.  Unfortunately that routine can be a bit monotonous at times, but at least it’s at home.  To prepare for my home coming Lindsey cleaned and sanitized everything in the house.  Our bedroom is a safe zone for me and the kids aren’t allowed to go in there.  When the kids come back from pre-school or anywhere out and about they have to wash their hands.  They’ve picked that habit up pretty well and will hold their hands up to my nose to smell the soap so I know they are clean.  Every now and then Sydney collapses to the floor with an “I’m too tired to wash my hands!” But eventually she gives in.

I’ve been a lot more tired at home than I thought I would be.  I think part of that is the stimulation of 3 kids plus stairs.  Those damn stairs.  You could set $1,000 at the top of the stairs and depending on how I was doing, I might just pass it by.  Slowly but surely though I’m gaining strength back.  I do feel better today than I did yesterday, and here’s to hoping that trend continues.

My Immune System
My counts are coming up nicely, but the problem is my new cells have never dealt with a virus or bacteria.  Remember, it’s just like being a newborn baby.  Because of this, I have to wear a special mask if I go out in public.  Right now the only public I go out into is the clinic for lab draws and checkups.  There’s too much risk in picking something up that my body doesn’t know how to fight off yet.  At my next appointment I’m going to ask about immunization schedules.  Not sure if I start immunizations at a specified day or if it just depends on how I’m doing.

How I’m Doing
Overall I’m doing good.  My stomach is the biggest issue.  It’s upset a lot and  while I’ve managed to keep things down on the north end, they flow out rather quickly on the south end.  Thankfully Imodium seems to control that issue.  I still take anti-nausea meds to try and help.  Sometimes they do help and sometimes I’m squirming on the couch to find a comfortable position.  I also seem to be colder than I used to be.  Previously I could walk around the house in shorts and a t-shirt and be just fine.   Now I wrap myself up in a blanket, have the fire going and even turned the heat up.  It will be interestng to see how long these differences last or if they become the new norm.  It will take months or more for my body to figure out how it wants to act.

What’s Up Doc
I saw Dr. Nelson on Monday.  This was my first time seeing him since before transplant.  Overall he was very pleased with my current state.  He said I’m probably in the top 5% of patients as far as how well I’m doing.  He asked me if I’m an exercise buff which drew an audible laugh from Lindsey.  I may not work out, but I guess my young body can bounce back better than some.  At this point I should be going to clinic twice a week.  Once to see Dr. Nelson and once for lab draw only.  However since my counts are up and everything but my magnesium is in range, Dr. Nelson said I could just see him next Monday.  That means only 1 visit this week!  As for my magnesium it was only slightly low.  I’m now taking an oral pill to help with that.

Be Careful What You Ask For
To recap, the stem cells that were put into me is the Graft.  I am the host.  The main complication with transplant is Graft vs Host Disease (GVH) where Dom’s cells recognize my cells as foreign and begin to attack them.  Some of the drugs I’m taking are to prevent GVH.  GVH will most likely occur in the skin, gut or liver.

Now here’s the kicker…there is also the Graft vs Leukemia effect (GVL).  Just like Dom’s cells may recognize my skin as foreign and attack it, the hope is Dom’s cells recognize any remaining leukemia cells and attack those.  The problem being, we are suppressing Dom’s cells so they aren’t as likely to attack.

So during my conversation with Dr. Nelson on all of this I asked why we don’t induce GVH.  His answer was quite simply “because people die from it”.  Of course people die from relapsed leukemia as well, just not as quickly.  So the balancing act that Dr. Nelson will carry out over the next few months is to decrease my meds that suppress Dom’s cells but not so much that it kills me. He thinks I will have some GVH.  It’s odd because I want GVH to wipe away any remaining cells, but at the same time I don’t want it to kill me.  As Dr. Nelson said, be careful what you ask for.

Next Steps
Right now life will look the same for the next few months.  Rest, drink plenty of water, eat the right foods, and increase activity as tolerated.  I’ll probably be a shut in for most of the winter.  Maybe that will change once I start to get immunizations.  And obviously, I’ll travel to clinic for checkups.  It’s a little weird to think of recovery in months instead of weeks.  Today I was reading a few stories where people were talking years and not months.  I do have my age on my side and I’m a stubborn SOB, so hopefully I can stay in the top 5% and be better sooner.

A Duck Dynasty Prayer
You give me each day as a gift.  What I do with it is my choice.  May the choices I make and how I spend my time honor you God.  It’s hard to get up and do things.  It’s hard to lay down and do nothing.  Help me to find a balance.  Something that will pass the time and enrich me.  I thank you God for getting me to this point.  Let’s continue on this journey together.  Thank you for another day.