Raindrops and Sunbeams

Be your own advocate…

Posted on: July 28, 2010

This lesson was brought home to me yet again on Monday….I was out in my studio, playing with jewelry…when the phone rang.

It was my oncologist’s office, calling to remind me that I had an appointment on Tuesday…..say what? I said…no I don’t….and Robin (not her real name) said…yes, you do. AND….you are scheduled to have an Aranesp shot on Thursday….and I was going to put them together to save you a co-pay. My mind is now racing, trying to remember if I had done this or not. My mind said No..you did not.

Back to Robin on the phone…..I questioned two things….why did I have another appointment with the Doctor, when I just saw her last week and got the good news that the Lymphoma was in complete remission? And….why would I be getting an Aranesp shot, when I am no longer getting chemo?

Kudos to Robin, who then went back to see when and why the appointments had been made…..and then all became clear. After each chemo session, appointments are automatically generated for a visit with the Doctor and any other shots/tests you might need. Ok…that may be….but my last Chemo was June 15…..and this is (was) July 26….seems a little ‘off’.  To her credit, Robin simply waited for my decision on what to do with these appointments.

I told her….cancel the Doctor appointment – I just saw her, and if a reason for adding an appointment wasn’t urgent and coming from new concerns, it was unnecessary. I also told her I was opting out of getting the Aranesp shot….from my research (you CANNOT have too much information about treatment/drugs that are being considered for your treatment), there were absolute prohibitions  (from the drug manufacturer’s site) on giving this drug for any reason other than depressed blood counts DUE to chemotherapy. There are serious side effects to this drug – which very well may be offset for the good it does during chemo…..but that is no longer me. Robin then told me I was also scheduled for another Aranesp shot first week of August. I opted out of that one too.

The lessons I have learned in the last seven months have served me well I think….question everything, research what you can, ask for clarification on what you don’t understand…..if you don’t do it, no one else will!

So…now I’m back to just having a port flush on August 13 (something else new….as I’m no longer getting chemo on a regular schedule, the port needs to be kept clear), and an appointment with the Doctor in September for a progress report, and scheduling of a PET scan to monitor my progress.

Ahhhh…..life is returning to normal….and I am loving every precious minute of it!


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