The Right Person for the Job

Yesterday I was home in bed fighting a horrible sinus infection that has kicked my butt all over the place. I called the clinical trial coordinator, Kathy, to tell her about my itchy rashy side effect (under my arms-don't get any dirty ideas) and mentioned the craziness of the last visit. I was so upset and I didn't even go into that much detail. So I asked Kathy for the number of the Clinical Research Unit Manager, Jill. I left her a message about being very upset about my last visit.

Jill called me back within an hour even though her vm greeting said she would be out of the office all day. She said she really wanted to hear what I had to say. I spoke to her for about an hour about everything that was said on the last visit regarding the pregnancy test. Jill and Kathy both told me that Dr. Minton's office was supposed to call me and explain why I might have had a false positive pregnancy. It seems that some cancers give off low levels of hormones that might give a false positive and the doctor's office should have called and explained that to me.

While it would be nice to receive a call from the doctor's office once in awhile (we have only met Dr. Minton the one time), if ANY of the nurses had explained that to me in an intelligent, clinical manner, I would have felt better that day.

When I went over what was said to me with Jill, she seemed appalled, shocked, embarassed, all at once. This is the only proper response.

Jill was a much better person to talk to then the Patient Relations Rep. She seemed genuinely interested in how I felt about things and put a lot of emphasis on ethics in the hospital. She told me she is going to have a meeting with all of the nurses to discuss what happened with me and that EVERY aspect of that incident was handled poorly.

Jill also knows I got a rocky start with my experience with Moffitt and we went over that as well. She asked what she could do to make it better and I just don't want anything. I just want to give the feedback to the proper person so that future patients don't have to experience the emotional roller coaster of having nurses tell you you're pregnant when it's not biologically possible. Putting it on me, the patient, "maybe they only took one ovary, not two-are you sure they took both?" That is definitely not the way to go. Jill vehemently agreed.

It was nice talking to someone that was really listening. I hope the nurses don't all hate me for this. I'm just trying to survive cancer with a little bit of dignity and positivity.

Keep praying that the drug is working. I'm so very hopeful that it is. We'll find out for sure the 2nd week of January. I'm sure that will be a lengthy post indeed.

Love you all and Happy Everything!!!