Reflection

Dear family and friends,

It has been a few days since I posted and I started receiving some inquiring texts.  Please know everything is okay but it has been an overwhelming few days.  I wasn't sure what to say or how I felt or in someways even what was going on.

It seems to be that when everything feels like its going the right way, a speed bump appears under my tires.  You know the kind that are about 2 ft wide and blend into the pavement so you don't know you have hit them until your chassis scraping accross the top.  And all you can do is keep going , cringing every inch.

Well to make several long days stories short: I have two infections now.  A staph which we knew about and now strep.  Both of these are likely from my own body rather than outside sources.  We pulled out the PICC line because bacteria like to hide in the crevices of the plastic tubing though we did try to save it via antibiotics.  The bacteria I have are being resistant to the run of the mill stuff so I'm back on the loaded guns.  I have no central vein access only IVs.  We are babying them along as they half to be changed every four days or when the vein blows.  All my other drugs are by mouth now which means breakfast consists of pills and liquids, as does other mealtimes.

One of the other problems PICC lines is they can encourage blood clots.  Sure enough, even with low platelets, I found out today I have two in my arm.  Typically these just get reabsorbed into the body with no issues.  Mine are currently not causing any problems though my doctor did write me off discus and javelin for now.

Of course the big question in everyone's mind is blood counts.  So far nothing.  This could mean a lot of things.  Firstly,  that I have slow engraftment.  The 16 day engraftment is an average pulled from stem cell transplant patients.  Most have cancer.  Aplastic anemia (AA) may be more sluggish to respond.  A bone marrow transplant (which is actual bone marrow material, not the kind I got) response in AA patients is 33 days.  They don't do many AA transplants period because we are so rare and even fewer are stem cell.

The other options are far more complicated and far more to deal with but essentially would require getting more stem cell material and boosting or trying again.

All that considered my body is doing well.  I am mostly out of pain, I'm eating very well and I'm still able to walk quite a bit.  I am not SICK considering I have two infections. My body strength has definitely degraded but I work with physio everyday.  The only odd thing is my intense desire to eat red licorice which I am doing as we speak.

My biggest challenge right now is the emotional side.  I've been here for a long time without seeing most of my family.  This weekend will be the first time to see Madeleine and my parents since I came. I am trying to take care of all of them in my own way with few resources and little good information.

I believe this has been probably harder on my family than me.  They want to care for me but are inhibited by work, distance and the phobia of bringing something in.

Madeleine has been a trooper like no other.  She as an inner strength I never saw before and I am so proud of her. She is doing at seven what adults have a hard time doing after decades of living.

All of this is made better by Linda's presence.  She has a natural calm and strength.  She is as smart as a whip and has been diligently mastering the terminology and medical information to help me sort through my priorities. And I trust her to know my needs and make decisions about whether I've eaten enough, slept enough etc. Its a relief to all of us have the care and love of such an unselfish woman.

I am also reminded during this time of my grandfather in WWII. He was part of the Burma Campaign, one of the forgotten fronts of the war.  I think of him and how it must of been to keep going every day.  Not knowing what he was going to face on patrol, not knowing what orders were going to be handed down.  And not knowing what his family was doing at home.  But everyday, knowing he had to lead his men in an orderly fashion around the chaos to hopefully make a difference.

My grandfather rarely talked about these times and certainly never to me. Mom said the war changed him, made him harder.  But he survived and came home to care for his family.
 I draw great strength from remembering him. I believe he chose his actions everyday not based on his fear or confidence but on the courage of what needed to be done and his duty to his men.

Above all, I have faith.  Though I struggle to see it, all good things will come in time and God will walk me through this.

Until next time, all my love,
E