01 February 2013

Our MDS Journey, Part Four

It’s been a bit of time since my last input in either of my blogs, journal and quite a bit in my care occurred, leaving many of my family and friends out of the loop.  My team of doctors and nurses who visit with me every morning of the week, had commented up until Day 18/Thursday, 24 Jan that they were extremely surprised and excited that I was doing so well.  So well as compared to most patients at my stage, that I had not had any “bumps in the road,” they spoke to so.  That Thursday, I carried on in the morning into a routine that I built for myself—waking up 0600, shower/get cleaned up, have breakfast, and go for a brief walk (1/4 to 1/2 mile) all by 1000-1100.  That morning though, I felt a bit fatigued, so I decided to lie down and take a nap.  

This nap lasted a couple of hours and ended with shivering and teeth rattling—thinking that this was due to just being a bit cold, I gave it 10-15 minutes before I called the nurse.  Once I called the nurse, gears changed, 10 warmed blankets were added, vitals taken, doctors called, blood culture/labs were taken and the next three days would leave me bed ridden.  My initial temperatures were in the 102-103 range but would peak at 104.2.  The final disposition was that I received via an open sore in my mouth a strep/bacterial infection—they determined this from live cultures they grew in the lab.  Day 21/Sunday, 27 Jan finally brought a break in fever with sweats off and on all day, with the final break late Sunday evening.  I finally left the bed, beyond bathroom breaks, for short walks and so forth on Monday. 

In the time since my last entry, I have also changed/moved rooms twice, with each one better than the last.  The last move occurred last evening.  I now have a view over much of the City of Baltimore and a warm and inviting afternoon sun.  The sun was something that I had to walk clear across the hospital campus to get a view and to bask in—a simple pleasure/feeling that I seemed to have taken advantage of.  There are a lot of things in life that I seemed to have taken advantage of, now to be replaced with newer memories and with a sense of appreciation that I could have never imagined prior to cancer.  Life will never be the same. 

Today is Day 25/Thursday, 31 Jan.  I took my first caffeine pill and today was the first day in a very long while that I do not have a headache!  What a feeling!  I also have been on Ambien for five nights and have had the best nights of sleep since being admitted—a full eight hours every night, with occasional wake-ups for vitals, but right back to sleep!  Day 25 is the day that we should begin seeing my counts rise in the neutrophil category—the other categories, Red Blood Cells, White Blood Cells and Platelet counts are all increasing which mean that the neutrophil category should begin showing signs of increase.  This increase will determine when I will and how I will be temporarily discharged (either to remain the area or allowed to return home).

The temporary discharge will be for approximately 2 weeks or more to allow all the counts to return to a level to allow for more chemotherapy, then transplant and Lord willing, the cure.  Lastly, I would like to really thank my wife as she resides across the street at the Hackerman-Patz Family Pavilion, makes my breakfast (this hospital food is not for cancer patients), is here by 0800 and stays right by my side in my room, on my walks, makes lunch and dinner and leaves at 2000-2100 only to wake to “groundhog-day.”  She’s my hero through this, my rock and the shoulder for me.  We both pray that we get through this so that we can progress and move on to the next phase in our lives, the birth of our daughter in the latter part of May to early June of this year.  She is why I fight so hard.  Love to my bride and my daughter.