Posted by: Ken Wheatley | July 1, 2009

No Hope in the City???

Our appointment was at 8am, and it’s normally a three hour drive, but we made it in two and a half. (Yes, I can “see” the knowing head shakes from those of you who know the N.Y. driver in me.)

We didn’t meet with the doctor (Koczywas) we had been referred to by Dr. B., (problem 1),  but another seemingly competent one, Dr. Cristea. In short, Cristea said that after reviewing Sheila’s history, there aren’t any trials at the City of Hope hospital targeting lung cancer, so there wasn’t anything they could do for her.

We asked if she had spoken to Dr. B about this, and she said that she had spoken to another doctor in Dr. B’s office who we’d never heard of (problem 2). Why on earth would she discuss a case with a doctor who had never seen or treated Sheila instead of asking for, and talking with Dr. B. ????????!!!!!!!!!

Obviously we were shocked on many levels. Why did Dr. B. send us there if there weren’t any applicable trials? I asked about seeing the doctor we had been referred to and Cristea said that they all work together and have the same programs, so Koczywas wouldn’t tell us anything different. “Sorry for the bad news…”

Needless to say, on the way home Sheila cried and cried. And yelled. It was a quiet drive otherwise. At one point she did call Dr. B’s office to let her know what transpired.

Dr. B called Sheila a few hours later expressing shock at the news and said that she would call Dr. K, the doctor we were supposed to see. Shortly thereafter, Dr. B called back and said that there is a trial at CH that Sheila qualifies for, so she’s not sure why Cristea told us otherwise.

So…are they just incompetent or lazy?

Needless to say, I called Cristea last night and left a scalding message and “requested” that she call back to explain what happened. I left another message today with her nurse practitioner. Of course, I haven’t heard from them.

Our confidence is shaken in the oncology dept at CH at this point. If they can’t get something right as simple as whether they have a drug trial available for a patient or not, what does that say about the more complicated process of administering the trial?!

Sheila spent hours going from one department to another at UCSD and Scripps pulling her records and getting copies made. She was up past midnight, coughing her brains out, while assembling the records into some coherent sequence. It may not be how they really feel, but the outward actions and temperment of many of the people we interact with sure seems to display an utter disregard for the time drain and suffering patients go through. For once, I’d love for them to change places and experience the, at times, gut wretching, sleep deprived life many patients live on a daily basis.

More than once we’ve felt like we’re blazing a trail. That somehow Sheila is the first cancer patient they’ve every laid eyes on and have to figure out the processes and procedures for the very first time.

The new radiation therapy building at UCSD that’s only three weeks old, uses different software than the UCSD Moores cancer center it belongs to. They’re across the street from each other! They don’t share the same patient information database!!! How insane is that!

I could go on, (and on, and on) but my head’s going to explode if I don’t change my focus right now. Their screw-ups, their seeming apathy, their continual process and conversational disconnects are screwing with my wife’s life and that makes me very angry…..

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