A Few Days behind...

Today is technically Day + 2 but I missed two daily posts so I'll include them in this brief post. 

This morning is Wednesday May 23rd.  I feel much stronger than yesterday and will hopefully walk a little today unlike the past two. 

Monday was the big day (Day - 0) or as it's known here my new Stem Cell Birthday!!!!

Hematapoietic (blood) Stem Cell Transplant (HSCT) is the highlight of our journey here in Chicago to pursue and kill my malfunctioning immune system that has affected my mobility, strength etc.

I started the "mobilization" process a few weeks ago by taking Neupogen shots twice daily to help increase the number of stem cells produced in my red bone marrow and circulating in my blood in many forms but generically called white blood cells. 

After 6 days of Neupogen I was attached to a machine to separate the new and circulating stem cells from my blood. The minimum collection required was 2 million/kg of my weight to provide assurance my body would have sufficient supply to return to me after the chemotherapy.  The collection was successful determined by a quick sampling. The cells were then treated with preservatives and frozen. 

For those considering this process with Dr. Burt or any nonmyeloablative protocol, stem cell transplant is not required to survive.  As Dr. Burt explains, he harvests and transplants his patients' stem cells to reduce recovery time.  Other protocols that use a myeloablative (more aggressive) protocol destroy the immune system completely and require a stem cell transplant to survive.

The team arrived with my frozen stem cells still in the cryopreserve tank.  The scene took on an air of importance as people took their places verifying ID #'s, batches and preparing for the infusion.  The tech began thawing my cells from the liquid nitrogen tank and a minister arrived to bless the cells before infusion.  She said a very nice prayer thanking God for the physicians and researchers who have made this possible and the team to put them in today.  We were also treated to a visit by Dr. Burt and Amy Morgan who stayed for the blessing and most of the infusion. 

Once the cells were warm Kelly hooked them up and off they went.  The first few minutes are crucial to make sure allergic reactions to the preservatives do not occur. During the transplant my blood pressure and heart rate were constantly monitored.

I felt a very warm sensation throughout my core as they reentered my body.  I closed my eyes and said a short prayer asking God to please allow this process to cease the process causing the damage from this disease and to express thanks to have this opportunity so many others do not.   

Twenty minutes later, the approximately 968,760,000 Hematopoietic Stem Cells were sent to battle!!

DAY + 1

The evening of Day 0 was uneventful.  Overall I was feeling ok and strong enough even that Bea agreed to sleep in the apartment.  I turned in around 10:00 to try to get a good night sleep.  The hiccups and acid reflux I have had are still with me basically 24/7 despite best efforts of the team to eliminate them.  Like so many pieces to this complex treatment, people react differently.  My hiccups started almost immediately after chemo last week and have not left.  On Monday evening they continued making it difficult to sleep. 

When I dozed off I encountered the craziest, scariest series of dreams I have ever had.  Good old fashioned heart pounding sweat through your sheets nightmares.  Again, no one knows why or if any one or more of the toxic chemicals react on the body this way but this is how it has affected me.  I vividly remember every detail of all of them and it made for a bumpy night. 

Before long nausea and vomiting set in as well so Monday night wasn't the best.  I texted Bea around 7:00 AM asking her to come and in what seemed like 8 seconds she walked through the door with homemade oatmeal and had already delivered the pasta dish she cooked the night before at 9:00 to the nurses for storage for our dinner. 
Bea sat with me and I felt myself weakening by the minute.  I developed fever and literally couldn't stand up.   The team came in and were unclear what was causing the reaction and fever.  I had also developed a rash and wasn't urinating.  I asked Bea to move me to the bed and it took both hands on her shoulders holding steady to make the 4 steps.  I couldn't close my hand or wiggle my toes and was really scared.  For about 8 hours yesterday I was really uncomfortable.  You know when you have a dream where you can't move and when you wake up you're so happy it's over?  This was a day of awful dreams and then waking up and still not being able to move! 

Dr. Burt checked in midday and ordered more steroids and fluids to reduce the fever.  I awoke around 5:00 at the conclusion of I think Bea's 8th movie...  Within a few minutes I knew I was on an upswing.  Before long I moved to the chair and felt some energy return to my body.  A short time later Dr. Burt came back for a third time and was please to see me in the chair with eyes open.  He explained that while he can't be sure, some patients with neurological diseases have a bad reaction to the rabbit derived polyclonal antithymocyte globulin which is used because it is a drug particularly effective in killing human T-cell lymphocytes.  This may have caused the fever and fever with MS patients always exacerbates symptoms.  The combination was unpleasant BUT by 6:30 last evening I was sitting in front of the biggest bowl of my wife's spaghetti with meat sauce with peppers, onions and she even added some chick peas... Heaven!  To continue the party I was hankering for some ice cream and we found this web site ceodeliveries.com that delivers from a huge number of restaurants.  We found Bobtail Homemade hard pack ice cream.  I went with the 3 scoop brownie sundae with the works.  Bea went with the 2 scooper and a good time was had by all!

We saw the final of Dancing With the Stars and because Bea had the remote control on the couch she determined it was time as she says "para hablar con Papa Diso" and called it a night...  It was joyous to just sit in bed with energy, able to move and stand on my own!!  Ahh simple joys!!

I read for a few hours on my computer.  I still had the hiccups but was content to not be delerious like earlier in the day.  Finally I fell off to sleep about 2:30 and within minutes BAM BANG ZOOM was right back into those crazy chemical induced dreams sweating like crazy! 

I woke up quickly and decided life would be easier with as little sleep possible the next few weeks.  On and off for the rest of the night wasn't bad and slept until about 7:00. 

DAY + 2

Today has been exponentially better than yesterday.  My numbers are down to .01 wbc/kg of my weight so technically that's I'm at rock bottom!  I managed a short walk in the AM, took a long shower and got a few hours of work in. 

Around 2:00 Amy Morgan the Nurse Practitioner stopped in to see if I was still strong.  The team get's so happy when they see their patients smiling!!  It makes me happy too!!

My older brother Tim arrived from NJ for a visit.  As much as I tried to convince him it wasn't necessary for him to come, I knew he would and I'm very glad he did.  He is my best friend and a busy guy so it means a lot for him to drop everything to make the trip.  And he brought me a Kindle Fire very cool!!  Tonight we will try to listen to the NHL playoff game on the Internet.