Solitary Confinement

Once again, the steroids provided their usual effect of insomnia, which is wonderful if you’re planning your next strategy for saving the world or subsist as a video game fanatic.  Yet, I don’t fit in either of these categories, so I lay on my comfy mattress (thank God for memory foam) thinking about my current condition and my next moves (that is, blog entry) at 4 in the morning.  Unfortunately, the reality of being neutropenic (possessing a very low white count) leaves me fairly homebound.  While this may sound refreshing for some (like my husband), I am an extremely social person, as if you couldn’t tell by my profession.  Don’t get me wrong, the concept of a clean home would be extremely exciting and that alone will take me months.  However, Rome wasn’t built in a day and I certainly don’t speculate that my focus on this undertaking will last more than 1-3 hours (in 30-60 minute increments) each day. 

You see, one of the greater difficulties that have stemmed either from my body’s battle with the disease or the effects of the treatment, is fatigue and focus.  These 2 facets were nearly completely controllable in my past.  It seemed like my body had unlimited fuel when I was working and in my element.  Complete focus kept me plowing through large projects such as rearranging my closet or garage or completing over 150 desktop items at work, while seeing 20+ patients a day and returning a multitude of phone calls.  The loss of my energizer bunny state is more distressing to me than the loss of freedom to escape my germ-free zone.  After all, I still can go out in the fresh air for walks or healthy people can visit “the sanctuary”.   Lord knows, I’m catching up on all the TV shows/series that people have recommended.  None of which contain the pure humor of Home Improvement, Hogan’s heroes or Rockford Files.  Oh, how I miss my “old shows” but I abhor wasting time watching shows I’ve already seen when there is so much that I haven’t seen yet. 

Even when I do wander out of my confinement, into the fresh, open air (which has been mostly pouring rain as of late), my body still doesn’t give me long before surrendering.  When I wandered off with a friend to run a few errands last week, I felt the oppressive drag of fatigue after about an hour and yearned to proceed home to sit on my cozy recliner with my heated throw blanket to warm and relax me, so that I could recover and move on to another feat (of 30-60 minute duration).  The breaks required last longer than the activity itself, which is quite distressing.  Alas, it is when the inspiration of my blogs arises so it isn’t all lost.  And Facebook occasionally perks me up with its humorous and inspirational entries and of course, the wonderful moral support that people express.  My circumstance is similar to a prisoner in jail who is confined to the prison campus but still has access to TV, books, video games, gym, cafeteria, and outdoors for limited periods of time during the day, but not necessarily on their schedule.  I can see now why it is still a punishment.

As I write, I realize I haven’t even communicated my greater concern about being neutropenic.  The two things frightening me most are (1) the possibility of acquiring an infection that either sets back my treatment or lands me in a hospital and (2) the potential for developing a lower white count after this infusion which delays my next infusion, thus extending the duration of overall treatment.  This, would stall my return of energy and essentially my return to work and the freedom that I was so accustomed to previously. 

One may think, but not necessarily ask, “Do you think about this killing you?”  Not really.  It may be a fleeing thought occasionally but death really isn’t an option.  With the outstanding care team by my side and my astute skills at recognizing changes in my body (ok, I understand it took me two months of symptoms before seeking care), I believe that even if I were to obtain an infection or other ill effect, I would recover.  After all, I did just run the Boston Marathon this past April.    

Hope is being able to see that there is light despite all of the darkness. ~ Desmond Tutu (one of my favorites)

My Hope socks!  Seemed appropriate for today.