Day +3

Another interesting day had by all.  To start with, last night was the best night sleep in a week!!  I slept on the couch and but for vitals and blood work I slept through the night!!  I have NO idea how because Tim and I ate a whole pizza AND I ate a meatball parm hero before bed.  The steroids make me so hungry and while my choice wasn't the healthiest it was good.  Ginos on Rush rocks!! 

I moved to the chair around 7:30 AM to start on the NY Times on my new Kindle Fire from my bro and things were looking good.  Before I sat down to read I decided I would clean the room.  This consists of me putting The 4 armed IV pole in as close to the center of the room possible and me circling the pole with my IV line picking up as many things without tangling myself.  It was a comical sight but it felt good to be productive.  I think I counted 7 TV Channel guides around the room because every time one falls the nurse brings me a new one because it's contaminated and I tell her I will throw it out.  Around 8:00 my lovely bride arrived with hot homemade oatmeal and Starbucks (who's better than me???)   Shortly after, Dr. Burt with his entourage blew in for the morning wave and brief conversation about anything other than medicine, research, my health or my lab results!  He will talk for 20 minutes about P90X and hiking in Brazil but if I ask him about lymphocytes or T-reg cells he just sort of gets this look on his face like, yeah I would like to but I just can't explain it to you...  It's quite charming in fact and it does not come from a place of ego so it's fine with me

I caught up on some work and prepared for a call at 11:30.  The plan was to finish work, lunch, walk, shower, more work and get back together for dinner with Tim.  After the call Bea and Tim went to pick up lunch.  I laid down for a few minutes and felt myself losing steam.  After the PM IV antibiotics I assured myself I was just tired and needed to push myself to walk and I would feel great.  2 short laps later I pulled back into room 1569 and knew we had a problem.  Sure enough 2 hours later, after a shower, the fever was back and there I was again draped over Bea's back heading for the rack!  I was frustrated because the day started so strong. 

The nurse paged Amy and they hooked me up to 125mgs of Solumedrol IV steroids.  They continue to believe it's from the rabbit ATG.  Dr. Burt has 4 patients for SCT on ward right now and Amy the Nurse Practitioner said all of us are having a bad day.  Amazingly within 2 hours the fever broke and I could stand again!  There is a very interesting aspect to this which encourages me greatly.  Dr. Burt almost did not accept me for treatment because he was unclear if my disease was still "inflammatory" and therefore responsive to IV steroids or "neurodegenerative" which is a different form of MS and almost a different disease dominated by neuronal and axonal loss as opposed to relapsing and remitting disease exacerbated by inflammation.  The fact that steroids have such a fast and positive effect on my symptoms or inflammation is very encouraging that my disease is still in a great position to be ceased AND to experience some reversal of existing physical symptoms.  Now that's what I'm talkin about!!  I can't wait to test my theory on Dr. Burt in the morning meeting.  His answer will probably go something like this "Kevin?.... I have to go"  haha!

Anyway all is well that ends well.  We had a nice take out dinner from Rosebud on Rush with great pasta, salad, veal and clam sauce.  Tim, Bea and I really had a lot of laughs.  It's great to have the company and it's so hard on Bea because I know she feels the pain with me and it was just nice to laugh and feel good.  The best laugh was the restaurant didn't accept credit cards so Tim had to pay again!