Day + 4

The day began with our daily visit from Dr. Burt and the team.  He gave me the usual nod of the head which I have now been conditioned to mean, you're fine, don't ask.  My brother arrived early so he met Dr. Burt and I mentioned my brother did a lot of business in Brazil so that was all it took for them to launch into a conversation of where they have been and what are the best restaurants and hotels in Brazil yada yada yada.  Hello?  It's me the skinhead in the corner in the pajamas you're supposed to be talking to!   Yesterday I blogged that I had a well thought out scientific theory that the problems experienced this week with fever etc. actually could be a very good sign because it confirmed my disease was still inflammatory and consequently had a much higher rate of success for this treatment.   the current success rate of completely stopping any further MS progression is between 70-75%.  However, if it does relapse most forms are more treatable by other immunomodulators.  Before he left I did present my logic.  His response??  "Ummm, not exactly..."  I told him it's my theory and it's not negotiable.  He chuckled and left. 

Here's a picture with the Wizard himself Dr. Burt, Amy Morgan his amazingly smart, compassionate and committed Nurse Practitioner, my beautiful wife Beatriz and I think Dr. Hi but not sure.  Dr. Hi has been to see me 5 times and says nothing except "hi" which I think is his name so technically he doesn't say anything except introduce himself each visit. 

I slept great last night and my day today was productive.  I worked, walked showered and read.  This is the first day without fever and it makes all the difference to my energy.  The HSCT for MS world is a buzz today because Dr. Burt published an editorial in the June MS Journal critiquing a position paper by Saccardi et al. related to HSCT treatment for MS.  It's very interesting yet controversial as it reiterates his strong opposition against myeloablative protocols for MS and performing HSCT on any MS patient without definitive inflammatory disease. 

My wife left mid afternoon for a shower and cleaning of the dishes of food she's brought me during the week.  The stress on Bea was evident today.  She's so strong and she has successfully managed this hardship with grace, courage and love without blinking once.  She stayed in the apartment to relax tonight becuasue my brother is leaving in the morning and we wanted to watch the hockey game. 

Below is the daily scorecard we watch until the numbers go up.  Pretty sophisticated eh?  I think they write the numbers in different color crayons each day...  By the way they paste this on the bathroom door each morning. 

The most important indicators are White Blood Cells which right now are <0.1.  The other key numbers are hemoglobin to allow my blood to carry oxygen and platelets to maintain a sufficient clotting capacity.  If either of the last two drop out of range I will be transfused with some O- go go juice!  So far so good.  Tomorrow AM at 6:00 I will start 780mcg of Filgastrin (Neupogen) in 2 shots to my lower abdomen.  This medication will "assist" the roughly 1 billion infused stem cells that were infused Monday and are currently swimming around without a care in the world to start getting serious with their lives.  The Neupogen sort of advises them it's time to settle down and start making a beautiful family of lymphocytes.  They recommend they go somewhere like in my pelvic area and they should do it soon.  It's an offer they can't refuse...  I hope that wasn't too scientific for yous.

That's a wrap for the day.  My brother just left and has an early flight tomorrow.  I can't thank him enough for his love and support.  He brought Bea and I great energy in a difficult few days.  The love and support shown to me these past few months by so many is enough for 10 men. 

Tiempo para hablar con Papa Dios...