I’m Not Dead Yet (I.N.D.Y.)

Friday, I had an appointment with Dr. Byas-Smith, who is in charge of the Emory pain management unit.  I spoke to him about the pain in my abdomen and lower back, but also the pain associated with the my edema and the pains in my shoulders..  No one seems terrible concerned about how much water I am retaining.   I have been wearing compression stockings, which help to minimize the swelling of my feet, legs, and thighs.  Unfortunately, when fluid is forced out of one area of the body, it looks for another resting place.  At the risk of sharing too much information….my scrotum has been filling with fluid and by the end of the day, I have a grapefruit sized scrotum.  I have mentioned this to my doctors and they have been indifferent; having some concern about giving me medicine to deal with the edema (because I had been having difficulty staying hydrated).  the Edema is affecting my quality of life.

My shoulder pain is another issue.  From my belly button and lower, I have plenty of fluid.  My upper body, though, is skin and bones.  Dr. Byas-Smith essentially said that my should pain is attributable to a lack of muscle growth.  So another thing i will discuss with Dr. Kauh is perhaps him prescribing some physical therapy (because right now, I am taking 1/2 tab of Methadone for long term pain management and Lortab for breakout pain).  We shall see.  I don’t have an appointment to see Dr. Kauh until 6/23, so I’ll be sending an Email (to which he often resounds to quickly).

In the meantime, MaryBeth and I head to Washington, DC to participate in the Pancreatic Cancer Action Network Advocacy Days.  It will be nice to have some time alone. That notwithstanding, I recall last year meeting several survivors of multiple recurrences.  Maybe hearing their stories will help regenerate how I have been feeling.

More Later,

Merle

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