Day + 9

My numbers are climbing almost as fast as subscribers to the Facebook class action law suit!!

As of this morning my white blood count finally broke the <0.1 and came in at 0.3.  A few hours later they drew another sample and my wbc count increased to 1.3.  The minimum range is 3.5-10.5 but I'm no longer neutripenic.   My absolute neutrophil count increased to 0.1 from too low too count so the composite report impressed Dr. Burt enough to give me those magic words... I'M GOING HOME TOMORROW!!!

I'm sitting in my chair listening to the Mets through the Internet and waiting for dinner in my room.  I'm feeling much better from a tough first half of the day.  For my last full day in Prentice I really thought it would be easier but it wasn't.  The combination of the engrafting process itself and the medication used to stimulate it has caused great pain and discomfort.  The main symptom is throbbing deep bone pain as a result of the Neupogen medication working within my bone marrow to increase stem cell production and distribution of appropriate cell lineages into the blood stream.  The pain is worse in the pelvic and chest areas, and of course, fever.  Secondary to that is profuse sweating all day and particularly during the few times I was able to nod off for a nap when the flood gates would open.  Lastly, I have suffered an MS symptom all day called L'hermitte's Syndrome which are sharp electrical pulses usually down one or both legs that occur with the stretching of the spinal column.  These occurred down my right leg.  I spoke with Dr. Burt regarding these and he thought it was just a result of the extreme stress put on my body culminated with the 5 days of Neupogen injections.   I certainly hope so because leaving the hospital with a new MS symptom was not the idea. 

I have committed to not judge success/failure of this procedure on one day or week or symptom. This treatment was a long process and so is the recovery. To be honest I spent the first week of treatment doubting myself for choosing the nonmyeloablative protocol as opposed to the myeloablative based on my 10 year diagnosis but this thought process is not helpful.  I did appropriate research, prayer and made the best informed decision considering multiple variables.  Dr. Burt is the best at what he does for MS and many other diseases in the world and in the end this process in many ways was as much as I could handle. The rest is out of my hands but to care for and respect my body appropriately.

My responsibility also now moves to those before me who tirelessly "pay it forward" and this I will do with zeal. I anticipate significant pushback from the political part of the business of MS so I need to be wise, but the message must be heard.

Bea will be returning to Chicago on the early flight from NY to help me move out (funny after 16 days it feels like a move.  It shouldn't take more than 3-4 men and a good sized truck!)  She went home on Monday as Jose Miguel just needed some Mommy time and in truth we weren't optimistic we would make our projected 5/31 discharge with the problems I was having with all the fevers.  As expected, Jose Miguel was thrilled and it was a good move for Bea too.  She needed our bed, house, son etc. to reconnect for a break during this crazy ride that began for us in earnest April 18th. 

I have also decided to not rush back to work too quickly. I will look into my disability policies to see if I can take at least 2-3 months from home. I feel my body needs proper time and space to begin repair.  By this afternoon I felt strong enough to offer to attempt the trip to NY on my own tomorrow but Bea insisted on returning to pick me up.  It will be a lot easier for me as  and I will enjoy having Bea with me.  AND I'm exhausted.  We will arrive in Islip by 10:00 tomorrow evening. 

I'm hoping for a restful night after a busy day.  I feel I will sweat through the night but if the fever stays away I should sleep well. 

Just a special thanks to all of you who have reached out to me privately with emails, texts and calls.  These messages helped me through some difficult moments and you contributed to the success of this treatment more than you know.  

Also a special prayer for a family member who recently made a very difficult decision to improve her own health.  She has been reading my blog and I want you to know, I and so many others love you and are praying for your speedy recovery.