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        how despondent one can be when you can't convince the patient to  have a                     
         positive attitude at all times. (Aldeane generally had a great attitude, but there                
         were times when nothing I could say would help her  get back to a positive                     

        how to apply mechanical skills for the patient's comfort in the hospital  (by                       
         building a framework that would hold the tube that delivered  humidified air from           
         the wall outlet to Aldeane's face without her having to wear an irritating mask                  
         while she had to breath through her mouth for hours),

        that nurses can teach the patient things that are not in the text books,  like how to          
         swallow pills correctly by keeping the chin down and to the side and not throwing          
         the head back while trying to  swallow, or how to use a pillow to keep the blanket          
         from putting pressure on the patient's  toes,

        that it is faster to push the patient to X-Ray and other hospital labs than                            
         waiting for the transportation personnel to show up,

        how to use computer skills to develop spreadsheets that helped to monitor the             
         progress and some times even to forecast when things would happen,

        how to use engineering skills to analyze the medical data, and

        that the amazing human body can withstand full-strength chemotherapy, a                      
         serious viral infection, fluid in the lungs, congestive heart failure and poorly                     
         administered (including overdoses) of  medications and still walk out of the                   
         hospital cured from MDS.

Although I grouped all of this in one segment, it really consists of two stages.  The initial
chemotherapy was administered as an outpatient service in the clinic.  Only the last
industrial-strength chemotherapy was provided in the hospital.  If you encounter this same
approach at your facility, double check that there will be a smooth transition between the
two facilities.  It was very disconcerting when we showed up at the hospital, only to be
chided for being 45 minutes late and that they couldn't find Aldeane's chart, the one that
showed her to be terrified of nausea.  It is hard to stay calm when you are playing catch-up
from the start.  We had been told at the clinic that it was no big deal what time we showed
up.  Wrong!  Show up early so you can maintain a sense of control - however little that
control actually is.     

I encourage you to find out where things are in the hospital.  When the patient needs a
warm blanket because she is shivering is not the time to wait and see how soon the
nurse will respond to a push of the button by the bed.  I could have Aldeane covered in a
pre-heated blanket in less than a minute by going to get it myself - after I found out where
they were stored.                         
Caregiver Perspective