Tuesday, November 23, 2004

Who's in control here? The phone calls were fast and furious today - everyone wants a piece of Jinni.... "Hello, this is Sue from Moses Cone Hospital... may I speak with Virginia?" "Hi, is Jinni in?... This is Dr. Newman's nurse and I need to schedule her surgery." "Is Virginia in? I'm with Wesley Long Hospitial, I need tp set an appointment for her muga scan." Finally Jinni - aka Virginia - had had enough, so the previously posted schedule is toast. If you don't know what I'm talking about - start here. She has been known as "my cruise director" ever since our courtship back in college. Scheduling and planning are her thing - not mine. We have a master calendar in our kitchen that lays out our lives in great detail, and it is updated daily - but entries are only made on the calendar if subsequent changes fit our previously defined schedule. Today, Jinni was having trouble making room for cancer on our calendar so she finally called all of the doctors and laid down her gentle law, "I am, therefore, I schedule." Because our truly wonderful medical oncologist will be our biggest buggaboo over the next 18 weeks, her biggest challenge was with them..... "Dr Ennever's office", said his office's scheduling nurse when she answered, "how can I help you, Ms. Hoggard?" Jinni started in... "I can't start my chemo on Monday, we need to move it to Thursday." Jinni announced, "I have to work, and if you give me my first treatment on Monday, I WILL FEEL LIKE HELL Wednesday through Friday. If I'm going to feel like hell, I'd rather do that on the weekends - so I don't feel bad about feeling bad... so let's start next Thursday... and let's go ahead and schedule all nine treatments for every other Thursday after that... Mondays just won't do. If I change my mind, I'll call and change it later." "Would 11:30 be OK on Thursday's." asked the nurse. "I need to be at work by 10:00, got anything earlier?" my girlfriend asked. "Is 8:15 good?", as the nurse rolled over and played dead.. "That's fine," said Jinni, "now, let's schedule the Neulasta injections for the same time every day following every chemo session... 8:15... right?" "Got you down for nine injections at 8:15, I' print out the schedule for you.", responded the nurse. "Now, Ms. Hoggard", as the nurse tried to re-exert authority, "we show that Dr. Newman's office is going to implant your Porta-cath this coming Friday... that might be a problem because you are moving your appoin..." "I already called Dr. Newman's office and had that changed to next Tuesday, I wanted to keep Thanksgiving week and this weekend free of doctors", interrupted my cruise director, "hope you don't mind." "No, that's fine Ms. Hoggard", said the scheduling nurse, "I'll just make a note.... we had your mugascan scheduled for Friday... should we move that? How's about 10:45 on Monday?" "That'll be fine.", said Jinni. I suppose the point of today's assertion of control was just that - an assertion of a patient's limited control over an otherwise uncontrollable situation. We can't control the cancer - that's the doctor's job - but we can at least try to control how we live our lives while dealing with the disease. Keep in mind that we are the paying customer - the consumer of the chemo and buyers of surgery. Sure, doctors and their staffs are important and their time is valuable, but their importance and value is derived from those who pay their fees - they need to understand that we have lives that require living and that they just might have to wait on us now and again. Jinni... You GO girl, I've got your back. 11:13:16 PM     comments to the above post so far, join in.

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